Recently the National Clinical Care Commission provided recommendations to Congress for improving federal diabetes programs in a report. This commission was put together after Congress passed the National Clinical Care Commission Act in 2017.

The report provides a wide range of recommendations that look to combat and prevent diabetes at many levels. An exciting aspect of the recommendations is that they consider how all agencies, including those that are not specifically health care, can fight diabetes. As primary care physicians are increasingly looking at all aspects of our patients’ lives to improve their health, these recommendations provide support for the work on which we are currently embarking.

The report acknowledges that many recent advances in diabetes treatments have made huge differences for clinicians and patients alike. Unfortunately, they have not been translated quickly into practice and when they have been, there have been disparities in the rollouts.

The document also states that many other factors, including housing, health care access, and food access, greatly affect the prevention and control of diabetes, according to a paper published in Annals of Internal Medicine. These factors have led to significant disparities in the population impacted by diabetes.

The topic areas of the recommendations include federal programs and policies; population-level programs to prevent diabetes, facilitate treatments, and promote health equity; type 2 diabetes prevention; insurance coverage; diabetes care delivery; and diabetes research.

Supporting recommendations in clinics

Family physicians, internists, and pediatricians can directly support many of the recommendations in their clinics. For those recommendations that are not directed at primary care clinics specifically, physicians should provide advocacy for their implementation.

If implemented, some of these recommendations will allow primary care physicians to improve at providing treatments to their patients for diabetes prevention and treatment of the disease. For example, the recommendations call for requirements of insurance companies to cover screening for prediabetes with the use of hemoglobin A1c and the participation in Centers for Disease Control and Prevention–recognized diabetes prevention programs.

The recommendations also call for the requirement of high-value diabetes services and treatment to be covered predeductible by insurers. If more consistently covered by insurers, it would be easier for us to implement these opportunities including educational groups in our practices. Additionally, if they were available predeductible, we could recommend these to our patients with less worry about cost.

Within care delivery recommendations, they also highlight the importance of an adequate and sustainable team to enhance care for patients with diabetes. Many of us know that it takes more than just the medications, but also significant counseling on diet, exercise and other lifestyle aspects – which need to be tailored to each patient for both prevention and treatment of diabetes.

The recommendations also call for the education and treatment modalities to be able to be provided and covered via virtual methods, while potentially increasing physicians’ ability to provide and patients’ ability to access. Ensuring both the workforce is available and that insurance provides coverage would make these programs accessible to so many more physician offices and ultimately patients.
 

Importance of social factors

As stated earlier, one of the great aspects of this report is its acknowledgment of the importance of social factors on the prevention and treatment of diabetes.

The report recommends expanding housing opportunities for low-income individuals as individuals cannot focus on their health when worried about housing. It also recommends increasing assistance with programs focused on food security. Primary care physicians should advocate for the adoption of these and other recommendations, because of the potentially meaningful impact these changes could have.

Ensuring adequate housing and access to healthy food would go a long way in the prevention and treatment of diabetes. If there are increases in these resources, team members within primary care physician offices would be wonderful allies to help direct patients to these resources. As these concerns may be top of mind for some patients, linking patients to these resources in the physician’s office may reinforce for patients that physicians understand our patients’ biggest concerns.

Ultimately, if the sweeping recommendations in this report are adopted and enforced, it could mean significant improvements for many patients at risk for and living with diabetes. They would provide payment for these resources making them more accessible for patients and physicians alike.

Dr. Wheat is a family physician at Erie Family Health Center and program director of Northwestern University’s McGaw Family Medicine residency program, both in Chicago. Dr. Wheat serves on the editorial advisory board of Family Practice News. You can contact her at [email protected].

Recently the National Clinical Care Commission provided recommendations to Congress for improving federal diabetes programs in a report. This commission was put together after Congress passed the National Clinical Care Commission Act in 2017.

The report provides a wide range of recommendations that look to combat and prevent diabetes at many levels. An exciting aspect of the recommendations is that they consider how all agencies, including those that are not specifically health care, can fight diabetes. As primary care physicians are increasingly looking at all aspects of our patients’ lives to improve their health, these recommendations provide support for the work on which we are currently embarking.

The report acknowledges that many recent advances in diabetes treatments have made huge differences for clinicians and patients alike. Unfortunately, they have not been translated quickly into practice and when they have been, there have been disparities in the rollouts.

The document also states that many other factors, including housing, health care access, and food access, greatly affect the prevention and control of diabetes, according to a paper published in Annals of Internal Medicine. These factors have led to significant disparities in the population impacted by diabetes.

The topic areas of the recommendations include federal programs and policies; population-level programs to prevent diabetes, facilitate treatments, and promote health equity; type 2 diabetes prevention; insurance coverage; diabetes care delivery; and diabetes research.

Supporting recommendations in clinics

Family physicians, internists, and pediatricians can directly support many of the recommendations in their clinics. For those recommendations that are not directed at primary care clinics specifically, physicians should provide advocacy for their implementation.

If implemented, some of these recommendations will allow primary care physicians to improve at providing treatments to their patients for diabetes prevention and treatment of the disease. For example, the recommendations call for requirements of insurance companies to cover screening for prediabetes with the use of hemoglobin A1c and the participation in Centers for Disease Control and Prevention–recognized diabetes prevention programs.

The recommendations also call for the requirement of high-value diabetes services and treatment to be covered predeductible by insurers. If more consistently covered by insurers, it would be easier for us to implement these opportunities including educational groups in our practices. Additionally, if they were available predeductible, we could recommend these to our patients with less worry about cost.

Within care delivery recommendations, they also highlight the importance of an adequate and sustainable team to enhance care for patients with diabetes. Many of us know that it takes more than just the medications, but also significant counseling on diet, exercise and other lifestyle aspects – which need to be tailored to each patient for both prevention and treatment of diabetes.

The recommendations also call for the education and treatment modalities to be able to be provided and covered via virtual methods, while potentially increasing physicians’ ability to provide and patients’ ability to access. Ensuring both the workforce is available and that insurance provides coverage would make these programs accessible to so many more physician offices and ultimately patients.
 

Importance of social factors

As stated earlier, one of the great aspects of this report is its acknowledgment of the importance of social factors on the prevention and treatment of diabetes.

The report recommends expanding housing opportunities for low-income individuals as individuals cannot focus on their health when worried about housing. It also recommends increasing assistance with programs focused on food security. Primary care physicians should advocate for the adoption of these and other recommendations, because of the potentially meaningful impact these changes could have.

Ensuring adequate housing and access to healthy food would go a long way in the prevention and treatment of diabetes. If there are increases in these resources, team members within primary care physician offices would be wonderful allies to help direct patients to these resources. As these concerns may be top of mind for some patients, linking patients to these resources in the physician’s office may reinforce for patients that physicians understand our patients’ biggest concerns.

Ultimately, if the sweeping recommendations in this report are adopted and enforced, it could mean significant improvements for many patients at risk for and living with diabetes. They would provide payment for these resources making them more accessible for patients and physicians alike.

Dr. Wheat is a family physician at Erie Family Health Center and program director of Northwestern University’s McGaw Family Medicine residency program, both in Chicago. Dr. Wheat serves on the editorial advisory board of Family Practice News. You can contact her at [email protected].

Recently the National Clinical Care Commission provided recommendations to Congress for improving federal diabetes programs in a report. This commission was put together after Congress passed the National Clinical Care Commission Act in 2017.

The report provides a wide range of recommendations that look to combat and prevent diabetes at many levels. An exciting aspect of the recommendations is that they consider how all agencies, including those that are not specifically health care, can fight diabetes. As primary care physicians are increasingly looking at all aspects of our patients’ lives to improve their health, these recommendations provide support for the work on which we are currently embarking.

The report acknowledges that many recent advances in diabetes treatments have made huge differences for clinicians and patients alike. Unfortunately, they have not been translated quickly into practice and when they have been, there have been disparities in the rollouts.

The document also states that many other factors, including housing, health care access, and food access, greatly affect the prevention and control of diabetes, according to a paper published in Annals of Internal Medicine. These factors have led to significant disparities in the population impacted by diabetes.

The topic areas of the recommendations include federal programs and policies; population-level programs to prevent diabetes, facilitate treatments, and promote health equity; type 2 diabetes prevention; insurance coverage; diabetes care delivery; and diabetes research.

Supporting recommendations in clinics

Family physicians, internists, and pediatricians can directly support many of the recommendations in their clinics. For those recommendations that are not directed at primary care clinics specifically, physicians should provide advocacy for their implementation.

If implemented, some of these recommendations will allow primary care physicians to improve at providing treatments to their patients for diabetes prevention and treatment of the disease. For example, the recommendations call for requirements of insurance companies to cover screening for prediabetes with the use of hemoglobin A1c and the participation in Centers for Disease Control and Prevention–recognized diabetes prevention programs.

The recommendations also call for the requirement of high-value diabetes services and treatment to be covered predeductible by insurers. If more consistently covered by insurers, it would be easier for us to implement these opportunities including educational groups in our practices. Additionally, if they were available predeductible, we could recommend these to our patients with less worry about cost.

Within care delivery recommendations, they also highlight the importance of an adequate and sustainable team to enhance care for patients with diabetes. Many of us know that it takes more than just the medications, but also significant counseling on diet, exercise and other lifestyle aspects – which need to be tailored to each patient for both prevention and treatment of diabetes.

The recommendations also call for the education and treatment modalities to be able to be provided and covered via virtual methods, while potentially increasing physicians’ ability to provide and patients’ ability to access. Ensuring both the workforce is available and that insurance provides coverage would make these programs accessible to so many more physician offices and ultimately patients.
 

Importance of social factors

As stated earlier, one of the great aspects of this report is its acknowledgment of the importance of social factors on the prevention and treatment of diabetes.

The report recommends expanding housing opportunities for low-income individuals as individuals cannot focus on their health when worried about housing. It also recommends increasing assistance with programs focused on food security. Primary care physicians should advocate for the adoption of these and other recommendations, because of the potentially meaningful impact these changes could have.

Ensuring adequate housing and access to healthy food would go a long way in the prevention and treatment of diabetes. If there are increases in these resources, team members within primary care physician offices would be wonderful allies to help direct patients to these resources. As these concerns may be top of mind for some patients, linking patients to these resources in the physician’s office may reinforce for patients that physicians understand our patients’ biggest concerns.

Ultimately, if the sweeping recommendations in this report are adopted and enforced, it could mean significant improvements for many patients at risk for and living with diabetes. They would provide payment for these resources making them more accessible for patients and physicians alike.

Dr. Wheat is a family physician at Erie Family Health Center and program director of Northwestern University’s McGaw Family Medicine residency program, both in Chicago. Dr. Wheat serves on the editorial advisory board of Family Practice News. You can contact her at [email protected].

A 4-mm punch biopsy of the annular border confirmed a diagnosis of localized granuloma annulare (GA).

There is a long list of differential diagnoses for annular patches and plaques; it includes tinea corporis and important systemic diseases such as sarcoidosis and Lyme disease. Clinical features of GA include annular, minimally scaly patches to plaques with central clearing on extensor surfaces in children and adults. Sometimes GA is much more widespread. Often, the diagnosis can be made clinically, but a punch biopsy of the deep dermis will confirm the diagnosis by showing palisading or interstitial granulomatous inflammation, necrobiotic collagen, and often mucin.

GA is a common inflammatory disorder with an uncertain etiology. Localized GA affects children and adults and is often self limiting. It may, however, last for months or years before resolving. Disseminated disease is much more recalcitrant with few good treatment options if topical steroids or phototherapy fails. Treatment for localized disease is much more successful with topical or intralesional steroids.

Trauma can cause a localized plaque to resolve; a lesion may resolve soon after a biopsy is performed. Possible related conditions include diabetes, thyroid disease, hepatitis C, and hyperlipidemia; but there is no consensus on focused screening. Similarly, associations or nonassociations with malignancy in adults have been cited, but evidence is lacking.¹

In this case, the patient and his family were reassured that the diagnosis wasn’t serious. In a single visit, he received a series of 6 to 7 injections of 10 mg/mL triamcinolone which led to resolution of the lesion in 4 weeks.

‌

Text courtesy of Jonathan Karnes, MD, medical director, MDFMR Dermatology Services, Augusta, ME. Photos courtesy of Jonathan Karnes, MD (copyright retained).

A 4-mm punch biopsy of the annular border confirmed a diagnosis of localized granuloma annulare (GA).

There is a long list of differential diagnoses for annular patches and plaques; it includes tinea corporis and important systemic diseases such as sarcoidosis and Lyme disease. Clinical features of GA include annular, minimally scaly patches to plaques with central clearing on extensor surfaces in children and adults. Sometimes GA is much more widespread. Often, the diagnosis can be made clinically, but a punch biopsy of the deep dermis will confirm the diagnosis by showing palisading or interstitial granulomatous inflammation, necrobiotic collagen, and often mucin.

GA is a common inflammatory disorder with an uncertain etiology. Localized GA affects children and adults and is often self limiting. It may, however, last for months or years before resolving. Disseminated disease is much more recalcitrant with few good treatment options if topical steroids or phototherapy fails. Treatment for localized disease is much more successful with topical or intralesional steroids.

Trauma can cause a localized plaque to resolve; a lesion may resolve soon after a biopsy is performed. Possible related conditions include diabetes, thyroid disease, hepatitis C, and hyperlipidemia; but there is no consensus on focused screening. Similarly, associations or nonassociations with malignancy in adults have been cited, but evidence is lacking.¹

In this case, the patient and his family were reassured that the diagnosis wasn’t serious. In a single visit, he received a series of 6 to 7 injections of 10 mg/mL triamcinolone which led to resolution of the lesion in 4 weeks.

‌

Text courtesy of Jonathan Karnes, MD, medical director, MDFMR Dermatology Services, Augusta, ME. Photos courtesy of Jonathan Karnes, MD (copyright retained).

A 4-mm punch biopsy of the annular border confirmed a diagnosis of localized granuloma annulare (GA).

There is a long list of differential diagnoses for annular patches and plaques; it includes tinea corporis and important systemic diseases such as sarcoidosis and Lyme disease. Clinical features of GA include annular, minimally scaly patches to plaques with central clearing on extensor surfaces in children and adults. Sometimes GA is much more widespread. Often, the diagnosis can be made clinically, but a punch biopsy of the deep dermis will confirm the diagnosis by showing palisading or interstitial granulomatous inflammation, necrobiotic collagen, and often mucin.

GA is a common inflammatory disorder with an uncertain etiology. Localized GA affects children and adults and is often self limiting. It may, however, last for months or years before resolving. Disseminated disease is much more recalcitrant with few good treatment options if topical steroids or phototherapy fails. Treatment for localized disease is much more successful with topical or intralesional steroids.

Trauma can cause a localized plaque to resolve; a lesion may resolve soon after a biopsy is performed. Possible related conditions include diabetes, thyroid disease, hepatitis C, and hyperlipidemia; but there is no consensus on focused screening. Similarly, associations or nonassociations with malignancy in adults have been cited, but evidence is lacking.¹

In this case, the patient and his family were reassured that the diagnosis wasn’t serious. In a single visit, he received a series of 6 to 7 injections of 10 mg/mL triamcinolone which led to resolution of the lesion in 4 weeks.

‌

Text courtesy of Jonathan Karnes, MD, medical director, MDFMR Dermatology Services, Augusta, ME. Photos courtesy of Jonathan Karnes, MD (copyright retained).

Heart failure (HF) is a costly and burdensome illness and is the top reason for hospital admissions for the US Department of Veterans Affairs (VA) and Medicare.¹ The cost of HF to the United States is estimated to grow to $3 billion annually by 2030.² People living with HF have a high symptom burden and poor quality of life.^3,4 Symptoms include shortness of breath, fatigue, depression, and decreases in psychosocial, existential, and spiritual well-being.^5-9

Veterans in the US are a unique cultural group with distinct contextual considerations around their experiences.¹⁰ Different groups of veterans require unique cultural considerations, such as the experiences of veterans who served during the Vietnam war and during Operation Iraqi Freedom/Operation Enduring Freedom (OIF/OEF). The extent of unmet needs of people living with HF, the number of veterans living with this illness, and the unique contextual components related to living with HF among veterans require further exploration into this illness experience for this distinct population. Research should explore innovative ways of managing both the number of people living with the illness and the significant impact of HF in people’s lives due to the high symptom burden and poor quality of life.³

This study used the model of adjustment to illness to explore the psychosocial adjustment to illness and the experience of US veterans living with HF, with a focus on the domains of meaning creation, self-schema, and world schema.¹¹ The model of adjustment to illness describes how people learn to adjust to living with an illness, which can lead to positive health outcomes. Meaning creation is defined as the process in which people create meaning from their experience living with illness. Self-schema is how people living with illness see themselves, and world schema is how people living with chronic illness see their place in the world. These domains shift as part of the adjustment to living with an illness described in this model.¹¹ This foundation allowed the investigators to explore the experience of living with HF among veterans with a focus on these domains. Our study aimed to cocreate illness narratives among veterans living with HF and to explore components of psychosocial adjustment informed by the model.

Methods

This study used narrative inquiry with a focus on illness narratives.^12-17 Narrative inquiry as defined by Catherine Riessman involves the generation of socially constructed and cocreated meanings between the researcher and narrator. The researcher is an active participant in narrative creation as the narrator chooses which events to include in the stories based on the social, historical, and cultural context of both the narrator (study participant) and audience (researcher). Riessman describes the importance of contextual factors and meaning creation as an important aspect of narrative inquiry.^12-14,16,17 It is important in narrative inquiry to consider how cultural, social, and historical factors influence narrative creation, constriction, and/or elimination.

This study prospectively created and collected data at a single time point. Semi-structured interviews explored psychosocial adjustment for people living with HF using an opening question modified from previous illness narrative research: Why do you think you got heart failure?¹⁸ Probes included the domains of psychosocial adjustment informed by the model of adjustment to illness domains (Figure). Emergent probes were used to illicit additional data around psychosocial adjustment to illness. Data were created and collected in accordance with narrative inquiry during the cocreation of the illness narratives between the researcher and study participants. This interview guide was tested by the first author in preliminary work to prepare for this study.

Allowing for emergent probes and acknowledging the role of the researcher as audience is key to the cocreation of narratives using this methodological framework. Narrators shape their narrative with the audience in mind; they cocreate their narrative with their audience using this type of narrative inquiry.^12,16 What the narrator chooses to include and exclude from their story provides a window into how they see themselves and their world.¹⁹ Audio recordings were used to capture data, allowing for the researcher to take contemporaneous notes exploring contextual considerations to the narrative cocreation process and to be used later in analysis. Analytic notes were completed during the interviews as well as later in analysis as part of the contextual reflection.

Setting

Research was conducted in the Rocky Mountain Regional VA Medical Center, Aurora, Colorado. Participants were recruited through the outpatient cardiology clinic where the interviews also took place. This study was approved through the Colorado Institutional Review Board and Rocky Mountain Regional VA Medical Center (IRB: 19-1064). Participants were identified by the treating cardiologist who was a part of the study team. Interested veterans were introduced to the first author who was stationed in an empty clinic room. The study cardiologist screened to ensure all participants were ≥ 18 years of age and had a diagnosis of HF for > 1 year. Persons with an impairment that could interfere with their ability to construct a narrative were also excluded.

Recruitment took place from October 2019 to January 2020. Three veterans refused participation. Five study participants provided informed consent and were enrolled and interviewed. All interviews were completed in the clinic at the time of consent per participant preference. One-hour long semi-structured interviews were conducted and audio recorded. A demographic form was administered at the end of each interview to capture contextual data. The researcher also kept a reflexive journal and audit trail.

Narrative Analysis

Riessman described general steps to conduct narrative analysis, including transcription, narrative clean-up, consideration of contextual factors, exploration of thematic threads, consideration of larger social narratives, and positioning.¹² The first author read transcripts while listening to the audio recordings to ensure accuracy. With narrative clean-up each narrative was organized to cocreate overall meaning, changed to protect anonymity, and refined to only include the illness narrative. For example, if a narrator told a story about childhood and then later in the interview remembered another detail to add to their story, narrative clean-up reordered events to make cohesive sense of the story. Demographic, historical, cultural, and social contexts of both the narrator and audience were reflected on during analysis to explore how these components may have shaped and influenced cocreation. Context was also considered within the larger VA setting.

Emergent themes were explored for convergence, divergence, and points of tension within and across each narrative. Larger social narratives were also considered for their influence on possible inclusion/exclusion of experience, such as how gender identity may have influenced study participants’ descriptions of their roles in social systems. These themes and narratives were then shared with our team, and we worked through decision points during the analysis process and discussed interpretation of the data to reach consensus.

Results

Five veterans living with HF were recruited and consented to participate in the study. Demographics of the participants and first author are included in the Table. Five illness narratives were cocreated, entitled: Blame the Cheese: Frank’s Illness Narrative; Love is Love: Bob’s Illness Narrative; The Brighter Things in Life is My Family: George’s Illness Narrative; We Never Know When Our Time is Coming: Bill’s Illness Narrative; and A Dream Deferred: Henry’s Illness Narrative.

Each narrative was explored focusing on the domains of the model of adjustment to illness. An emergent theme was also identified with multiple subthemes: being a veteran is unique. Related subthemes included: financial benefits, intersectionality of government and health care, the intersectionality of masculinity and military service, and the dichotomy of military experience.

The search for meaning creation after the experience of chronic illness emerged across interviews. One example of meaning creation was in Frank's illness narrative. Frank was unsure why he got HF: “Probably because I ate too much cheese…I mean, that’s gotta be it. It can’t be anything else.” By tying HF to his diet, he found meaning through his health behaviors.

Model of Adjustment to Illness

The narratives illustrate components of the model of adjustment to illness and describe how each of the participants either shifted their self-schema and world schema or reinforced their previously established schemas. It also demonstrates how people use narratives to create meaning and illness understanding from their illness experience, reflecting, and emphasizing different parts creating meaning from their experience.

A commonality across the narratives was a shift in self-schema, including the shift from being a provider to being reliant on others. In accordance with the dominant social narrative around men as providers, each narrator talked about their identity as a provider for themselves and their families. Often keeping their provider identity required modifications of the definition, from physical abilities and employment to financial security and stability. George made all his health care decisions based on his goal of providing for his family and protecting them from having to care for him: “I’m always thinking about the future, always trying to figure out how my family, if something should happen to me, how my family would cope, and how my family would be able to support themselves.” Bob’s health care goals were to stay alive long enough for his wife to get financial benefits as a surviving spouse: “That’s why I’m trying to make everything for her, you know. I’m not worried about myself. I’m not. Her I am, you know. And love is love.” Both of their health care decisions are shaped by their identity as a provider shifting to financial support.

Veteran Status

Being a veteran in the Veterans Health Administration (VHA) system impacted how a narrative understanding of illness was created. Veterans are a unique cultural population with aspects of their illness experience that are important to understand.¹⁰ Institutions such as the VA also enable and constrain components of narrative creation.²⁰ The illness narratives in this study were cocreated within the institutional setting of the VA. Part of the analysis included exploring how the institutional setting impacted the narrative creation. Emergent subthemes of the uniqueness of the veteran experience include financial benefits, intersectionality of government and health care, intersectionality of masculinity and military service, and the dichotomy of military experience.

In the US it is unique to the VA that the government both treats and assesses the severity of medical conditions to determine eligibility for health care and financial benefits. The VA’s financial benefits are intended to help compensate veterans who are experiencing illness as a result of their military experience.²¹ However, because the VA administers them the Veterans Benefits Administration and the VHA, veterans see both as interconnected. The perceived tie between illness severity and financial compensation could influence or bias how veterans understand their illness severity and experience. This may inadvertently encourage veterans to see their illness as being tied to their military service. This shaping of narratives should be considered as a contextual component as veterans obtain financial compensation and health insurance from the same larger organization that provides their health care and management.

George was a young man who during his service had chest pains and felt tired during physical training. He was surprised when his cardiologist explained his heart was enlarged. “All I know is when I initially joined the military, I was perfectly fine, you know, and when I was in the military, graduating, all that stuff, there was a glitch on the [electrocardiogram] they gave me after one day of doing [physical training] and then they’re like, oh, that’s fine. Come to find out it was mitral valve prolapse. And the doctors didn’t catch it then.” George feels the stress of the military caused his heart problems: “It wasn’t there before… so I’d have to say the strain from the military had to have caused it.” George’s medical history noted that he has a genetic connective tissue disorder that can lead to HF and likely was underlying cause of his illness. This example of how George pruned his narrative experience to highlight the cause as his military experience instead of a genetic disorder could have multiple financial and health benefits. The financial incentive for George to see his illness as caused by his military service could potentially bias his illness narrative to find his illness cause as tied to his service.

Government/Health Care Intersectionality

Veterans who may have experienced trust-breaking events with the government, like Agent Orange exposure or intergenerational racial trauma, may apply that experience to all government agencies. Bob felt the government had purposefully used him to create a military weapon. The army “knew I was angry and they used that for their advantage,” he said. Bob learned that he was exposed to Agent Orange in Vietnam, which is presumed to be associated with HF. Bob felt betrayed that the VHA had not figured out his health problems earlier. “I didn’t know anything about it until 6 months ago… Our government knew about it when they used it, and they didn’t care. They just wanted to win the war, and a whole lot of GIs like me suffered because of that, and I was like my government killed me? And I was fighting for them?”

Henry learned to distrust the government and the health care system because of a long history of systematic oppression and exploitation. These institutions’ erosion of trust has impact beyond the trust-breaking event itself but reverberates into how communities view organizations and institutions for generations. For Black Americans, who have historically been experimented on without consent by the US government and health care systems, this can make it especially hard to trust and build working relationships with those institutions. Health care professionals (HCPs) need to build collaborative partnerships with patients to provide effective care while understanding why some patients may have difficulty trusting health care systems, especially government-led systems.

The nature of HF as an illness can also make it difficult to predict and manage.²² This uncertainty and difficulty in managing HF can make it especially hard for people to establish trust with their HCPs whom they want to see as experts in their illness. HCPs in these narratives were often portrayed as incompetent or neglectful. The unpredictable nature of the illness itself was not reflected in the narrator’s experience.

Masculinity/Military Service Intersectionality

For the veteran narrators, tied into the identity of being a provider are social messages about masculinity. There is a unique intersectionality of being a man, the military culture, and living with chronic illnesses. Dominant social messages around being a man include being tough, not expressing emotion, self-reliance, and having power. This overlaps with social messages on military culture, including self-reliance, toughness, persistence in the face of adversity, limited expression of emotions, and the recognition of power and respect.²³

People who internalize these social messages on masculinity may be less likely to access mental health treatment.²³ This stigmatizing barrier to mental health treatment could impact how positive narratives are constructed around the experience of chronic illness for narrators who identify as masculine. Military and masculine identity could exclude or constrain stories about a veteran who did not “solider on” or who had to rely on others in a team to get things done. This shift can especially impact veterans experiencing chronic illnesses like HF, which often impact their physical abilities. Veterans may feel pressured to think of and portray themselves as being strong by limiting their expression of pain and other symptoms to remain in alignment with the dominant narrative. By not being open about the full experience of their illness both positive and negative, veterans may have unaddressed aspects of their illness experience or HCPs may not be able have all the information they need before the concern becomes a more serious health problem.

Dichotomy of Military Experience

Some narrators in this study talked about their military experience as both traumatic and beneficial. These dichotomous viewpoints can be difficult for veterans to construct a narrative understanding around. How can an inherently painful potentially traumatic experience, such as war, have benefits? This way of looking at the world may require a large narrative shift in their world and self-schemas to accept.

Bob hurt people in Vietnam as part of his job. “I did a lot of killing.” Bob met a village elder who stopped him from hurting people in the village and “in my spare time, I would go back to the village and he would teach me, how to be a better man,” Bob shared. “He taught me about life and everything, and he was awesome, just to this day, he’s like a father to me.” Bob tried to change his life and learned how to live a life full of love and care because of his experience in Vietnam. Though Bob hurt a lot of people in Vietnam, which still haunts him, he found meaning through his life lessons from the village elder. “I’m ashamed of what I did in Vietnam. I did some really bad stuff, but ever since then, I’ve always tried to do good to help people.”

Discussion

Exploring a person’s illness experience from a truly holistic pathway allows HCPs to see how the ripples of illness echo into the interconnection of surrounding systems and even across time. These stories suggest that veterans may experience their illness and construct their illness narratives based on the distinct contextual considerations of veteran culture.¹⁰ Research exploring how veterans see their illness and its potential impact on their health care access and choices could benefit from exploration into narrative understanding and meaning creation as a potentially contributing factor to health care decision making. As veterans are treated across health care systems, this has implications not only for VHA care, but community care as well.

These narratives also demonstrate how veterans create health care goals woven into their narrative understanding of their illness and its cause, lending insight into understanding health care decision making. This change in self-schema shapes how veterans see themselves and their role which shapes other aspects of their health care. These findings also contribute to our understanding of meaning creation. By exploring meaning making and narrative understanding, this work adds to our knowledge of the importance of spirituality as a component of the holistic experience of illness. There have been previous studies exploring the spiritual aspects of HF and the importance of meaning making.^24,25 Exploring meaning making as an aspect of illness narratives can have important implications. Future research could explore the connections between meaning creation and illness narratives.

Limitations

The sample of veterans who participated in this study and are not generalizable to all veteran populations. The sample also only reflects people who were willing to participate and may exclude experience of people who may not have felt comfortable talking to a VA employee about their experience. It is also important to note that the small sample size included primarily male and White participants. In narrative inquiry, the number of participants is not as essential as diving into the depth of the interviews with the participants.

It is also important to note the position of the interviewer. As a White cisgender, heterosexual, middle-aged, middle class female who was raised in rural Kansas in a predominantly Protestant community, the positionality of the interviewer as a cocreator of the data inherently shaped and influenced the narratives created during this study. This contextual understanding of narratives created within the research relationship is an essential component to narrative inquiry and understanding.

Conclusions

Exploring these veterans’ narrative understanding of their experience of illness has many potential implications for health care systems, HCPs, and our military and veteran populations described in this article. Thinking about how the impact of racism, the influence of incentives to remain ill, and the complex intersection of identity and health brings light to how these domains may influence how people see themselves and engage in health care. These domains from these stories of the heart may help millions of people living with chronic illnesses like HF to not only live with their illness but inform how their experience is shaped by the systems surrounding them, including health care, government, and systems of power and oppression.

Heart failure (HF) is a costly and burdensome illness and is the top reason for hospital admissions for the US Department of Veterans Affairs (VA) and Medicare.¹ The cost of HF to the United States is estimated to grow to $3 billion annually by 2030.² People living with HF have a high symptom burden and poor quality of life.^3,4 Symptoms include shortness of breath, fatigue, depression, and decreases in psychosocial, existential, and spiritual well-being.^5-9

Veterans in the US are a unique cultural group with distinct contextual considerations around their experiences.¹⁰ Different groups of veterans require unique cultural considerations, such as the experiences of veterans who served during the Vietnam war and during Operation Iraqi Freedom/Operation Enduring Freedom (OIF/OEF). The extent of unmet needs of people living with HF, the number of veterans living with this illness, and the unique contextual components related to living with HF among veterans require further exploration into this illness experience for this distinct population. Research should explore innovative ways of managing both the number of people living with the illness and the significant impact of HF in people’s lives due to the high symptom burden and poor quality of life.³

This study used the model of adjustment to illness to explore the psychosocial adjustment to illness and the experience of US veterans living with HF, with a focus on the domains of meaning creation, self-schema, and world schema.¹¹ The model of adjustment to illness describes how people learn to adjust to living with an illness, which can lead to positive health outcomes. Meaning creation is defined as the process in which people create meaning from their experience living with illness. Self-schema is how people living with illness see themselves, and world schema is how people living with chronic illness see their place in the world. These domains shift as part of the adjustment to living with an illness described in this model.¹¹ This foundation allowed the investigators to explore the experience of living with HF among veterans with a focus on these domains. Our study aimed to cocreate illness narratives among veterans living with HF and to explore components of psychosocial adjustment informed by the model.

Methods

This study used narrative inquiry with a focus on illness narratives.^12-17 Narrative inquiry as defined by Catherine Riessman involves the generation of socially constructed and cocreated meanings between the researcher and narrator. The researcher is an active participant in narrative creation as the narrator chooses which events to include in the stories based on the social, historical, and cultural context of both the narrator (study participant) and audience (researcher). Riessman describes the importance of contextual factors and meaning creation as an important aspect of narrative inquiry.^12-14,16,17 It is important in narrative inquiry to consider how cultural, social, and historical factors influence narrative creation, constriction, and/or elimination.

This study prospectively created and collected data at a single time point. Semi-structured interviews explored psychosocial adjustment for people living with HF using an opening question modified from previous illness narrative research: Why do you think you got heart failure?¹⁸ Probes included the domains of psychosocial adjustment informed by the model of adjustment to illness domains (Figure). Emergent probes were used to illicit additional data around psychosocial adjustment to illness. Data were created and collected in accordance with narrative inquiry during the cocreation of the illness narratives between the researcher and study participants. This interview guide was tested by the first author in preliminary work to prepare for this study.

Allowing for emergent probes and acknowledging the role of the researcher as audience is key to the cocreation of narratives using this methodological framework. Narrators shape their narrative with the audience in mind; they cocreate their narrative with their audience using this type of narrative inquiry.^12,16 What the narrator chooses to include and exclude from their story provides a window into how they see themselves and their world.¹⁹ Audio recordings were used to capture data, allowing for the researcher to take contemporaneous notes exploring contextual considerations to the narrative cocreation process and to be used later in analysis. Analytic notes were completed during the interviews as well as later in analysis as part of the contextual reflection.

Setting

Research was conducted in the Rocky Mountain Regional VA Medical Center, Aurora, Colorado. Participants were recruited through the outpatient cardiology clinic where the interviews also took place. This study was approved through the Colorado Institutional Review Board and Rocky Mountain Regional VA Medical Center (IRB: 19-1064). Participants were identified by the treating cardiologist who was a part of the study team. Interested veterans were introduced to the first author who was stationed in an empty clinic room. The study cardiologist screened to ensure all participants were ≥ 18 years of age and had a diagnosis of HF for > 1 year. Persons with an impairment that could interfere with their ability to construct a narrative were also excluded.

Recruitment took place from October 2019 to January 2020. Three veterans refused participation. Five study participants provided informed consent and were enrolled and interviewed. All interviews were completed in the clinic at the time of consent per participant preference. One-hour long semi-structured interviews were conducted and audio recorded. A demographic form was administered at the end of each interview to capture contextual data. The researcher also kept a reflexive journal and audit trail.

Narrative Analysis

Riessman described general steps to conduct narrative analysis, including transcription, narrative clean-up, consideration of contextual factors, exploration of thematic threads, consideration of larger social narratives, and positioning.¹² The first author read transcripts while listening to the audio recordings to ensure accuracy. With narrative clean-up each narrative was organized to cocreate overall meaning, changed to protect anonymity, and refined to only include the illness narrative. For example, if a narrator told a story about childhood and then later in the interview remembered another detail to add to their story, narrative clean-up reordered events to make cohesive sense of the story. Demographic, historical, cultural, and social contexts of both the narrator and audience were reflected on during analysis to explore how these components may have shaped and influenced cocreation. Context was also considered within the larger VA setting.

Emergent themes were explored for convergence, divergence, and points of tension within and across each narrative. Larger social narratives were also considered for their influence on possible inclusion/exclusion of experience, such as how gender identity may have influenced study participants’ descriptions of their roles in social systems. These themes and narratives were then shared with our team, and we worked through decision points during the analysis process and discussed interpretation of the data to reach consensus.

Results

Five veterans living with HF were recruited and consented to participate in the study. Demographics of the participants and first author are included in the Table. Five illness narratives were cocreated, entitled: Blame the Cheese: Frank’s Illness Narrative; Love is Love: Bob’s Illness Narrative; The Brighter Things in Life is My Family: George’s Illness Narrative; We Never Know When Our Time is Coming: Bill’s Illness Narrative; and A Dream Deferred: Henry’s Illness Narrative.

Each narrative was explored focusing on the domains of the model of adjustment to illness. An emergent theme was also identified with multiple subthemes: being a veteran is unique. Related subthemes included: financial benefits, intersectionality of government and health care, the intersectionality of masculinity and military service, and the dichotomy of military experience.

The search for meaning creation after the experience of chronic illness emerged across interviews. One example of meaning creation was in Frank's illness narrative. Frank was unsure why he got HF: “Probably because I ate too much cheese…I mean, that’s gotta be it. It can’t be anything else.” By tying HF to his diet, he found meaning through his health behaviors.

Model of Adjustment to Illness

The narratives illustrate components of the model of adjustment to illness and describe how each of the participants either shifted their self-schema and world schema or reinforced their previously established schemas. It also demonstrates how people use narratives to create meaning and illness understanding from their illness experience, reflecting, and emphasizing different parts creating meaning from their experience.

A commonality across the narratives was a shift in self-schema, including the shift from being a provider to being reliant on others. In accordance with the dominant social narrative around men as providers, each narrator talked about their identity as a provider for themselves and their families. Often keeping their provider identity required modifications of the definition, from physical abilities and employment to financial security and stability. George made all his health care decisions based on his goal of providing for his family and protecting them from having to care for him: “I’m always thinking about the future, always trying to figure out how my family, if something should happen to me, how my family would cope, and how my family would be able to support themselves.” Bob’s health care goals were to stay alive long enough for his wife to get financial benefits as a surviving spouse: “That’s why I’m trying to make everything for her, you know. I’m not worried about myself. I’m not. Her I am, you know. And love is love.” Both of their health care decisions are shaped by their identity as a provider shifting to financial support.

Veteran Status

Being a veteran in the Veterans Health Administration (VHA) system impacted how a narrative understanding of illness was created. Veterans are a unique cultural population with aspects of their illness experience that are important to understand.¹⁰ Institutions such as the VA also enable and constrain components of narrative creation.²⁰ The illness narratives in this study were cocreated within the institutional setting of the VA. Part of the analysis included exploring how the institutional setting impacted the narrative creation. Emergent subthemes of the uniqueness of the veteran experience include financial benefits, intersectionality of government and health care, intersectionality of masculinity and military service, and the dichotomy of military experience.

In the US it is unique to the VA that the government both treats and assesses the severity of medical conditions to determine eligibility for health care and financial benefits. The VA’s financial benefits are intended to help compensate veterans who are experiencing illness as a result of their military experience.²¹ However, because the VA administers them the Veterans Benefits Administration and the VHA, veterans see both as interconnected. The perceived tie between illness severity and financial compensation could influence or bias how veterans understand their illness severity and experience. This may inadvertently encourage veterans to see their illness as being tied to their military service. This shaping of narratives should be considered as a contextual component as veterans obtain financial compensation and health insurance from the same larger organization that provides their health care and management.

George was a young man who during his service had chest pains and felt tired during physical training. He was surprised when his cardiologist explained his heart was enlarged. “All I know is when I initially joined the military, I was perfectly fine, you know, and when I was in the military, graduating, all that stuff, there was a glitch on the [electrocardiogram] they gave me after one day of doing [physical training] and then they’re like, oh, that’s fine. Come to find out it was mitral valve prolapse. And the doctors didn’t catch it then.” George feels the stress of the military caused his heart problems: “It wasn’t there before… so I’d have to say the strain from the military had to have caused it.” George’s medical history noted that he has a genetic connective tissue disorder that can lead to HF and likely was underlying cause of his illness. This example of how George pruned his narrative experience to highlight the cause as his military experience instead of a genetic disorder could have multiple financial and health benefits. The financial incentive for George to see his illness as caused by his military service could potentially bias his illness narrative to find his illness cause as tied to his service.

Government/Health Care Intersectionality

Veterans who may have experienced trust-breaking events with the government, like Agent Orange exposure or intergenerational racial trauma, may apply that experience to all government agencies. Bob felt the government had purposefully used him to create a military weapon. The army “knew I was angry and they used that for their advantage,” he said. Bob learned that he was exposed to Agent Orange in Vietnam, which is presumed to be associated with HF. Bob felt betrayed that the VHA had not figured out his health problems earlier. “I didn’t know anything about it until 6 months ago… Our government knew about it when they used it, and they didn’t care. They just wanted to win the war, and a whole lot of GIs like me suffered because of that, and I was like my government killed me? And I was fighting for them?”

Henry learned to distrust the government and the health care system because of a long history of systematic oppression and exploitation. These institutions’ erosion of trust has impact beyond the trust-breaking event itself but reverberates into how communities view organizations and institutions for generations. For Black Americans, who have historically been experimented on without consent by the US government and health care systems, this can make it especially hard to trust and build working relationships with those institutions. Health care professionals (HCPs) need to build collaborative partnerships with patients to provide effective care while understanding why some patients may have difficulty trusting health care systems, especially government-led systems.

The nature of HF as an illness can also make it difficult to predict and manage.²² This uncertainty and difficulty in managing HF can make it especially hard for people to establish trust with their HCPs whom they want to see as experts in their illness. HCPs in these narratives were often portrayed as incompetent or neglectful. The unpredictable nature of the illness itself was not reflected in the narrator’s experience.

Masculinity/Military Service Intersectionality

For the veteran narrators, tied into the identity of being a provider are social messages about masculinity. There is a unique intersectionality of being a man, the military culture, and living with chronic illnesses. Dominant social messages around being a man include being tough, not expressing emotion, self-reliance, and having power. This overlaps with social messages on military culture, including self-reliance, toughness, persistence in the face of adversity, limited expression of emotions, and the recognition of power and respect.²³

People who internalize these social messages on masculinity may be less likely to access mental health treatment.²³ This stigmatizing barrier to mental health treatment could impact how positive narratives are constructed around the experience of chronic illness for narrators who identify as masculine. Military and masculine identity could exclude or constrain stories about a veteran who did not “solider on” or who had to rely on others in a team to get things done. This shift can especially impact veterans experiencing chronic illnesses like HF, which often impact their physical abilities. Veterans may feel pressured to think of and portray themselves as being strong by limiting their expression of pain and other symptoms to remain in alignment with the dominant narrative. By not being open about the full experience of their illness both positive and negative, veterans may have unaddressed aspects of their illness experience or HCPs may not be able have all the information they need before the concern becomes a more serious health problem.

Dichotomy of Military Experience

Some narrators in this study talked about their military experience as both traumatic and beneficial. These dichotomous viewpoints can be difficult for veterans to construct a narrative understanding around. How can an inherently painful potentially traumatic experience, such as war, have benefits? This way of looking at the world may require a large narrative shift in their world and self-schemas to accept.

Bob hurt people in Vietnam as part of his job. “I did a lot of killing.” Bob met a village elder who stopped him from hurting people in the village and “in my spare time, I would go back to the village and he would teach me, how to be a better man,” Bob shared. “He taught me about life and everything, and he was awesome, just to this day, he’s like a father to me.” Bob tried to change his life and learned how to live a life full of love and care because of his experience in Vietnam. Though Bob hurt a lot of people in Vietnam, which still haunts him, he found meaning through his life lessons from the village elder. “I’m ashamed of what I did in Vietnam. I did some really bad stuff, but ever since then, I’ve always tried to do good to help people.”

Discussion

Exploring a person’s illness experience from a truly holistic pathway allows HCPs to see how the ripples of illness echo into the interconnection of surrounding systems and even across time. These stories suggest that veterans may experience their illness and construct their illness narratives based on the distinct contextual considerations of veteran culture.¹⁰ Research exploring how veterans see their illness and its potential impact on their health care access and choices could benefit from exploration into narrative understanding and meaning creation as a potentially contributing factor to health care decision making. As veterans are treated across health care systems, this has implications not only for VHA care, but community care as well.

These narratives also demonstrate how veterans create health care goals woven into their narrative understanding of their illness and its cause, lending insight into understanding health care decision making. This change in self-schema shapes how veterans see themselves and their role which shapes other aspects of their health care. These findings also contribute to our understanding of meaning creation. By exploring meaning making and narrative understanding, this work adds to our knowledge of the importance of spirituality as a component of the holistic experience of illness. There have been previous studies exploring the spiritual aspects of HF and the importance of meaning making.^24,25 Exploring meaning making as an aspect of illness narratives can have important implications. Future research could explore the connections between meaning creation and illness narratives.

Limitations

The sample of veterans who participated in this study and are not generalizable to all veteran populations. The sample also only reflects people who were willing to participate and may exclude experience of people who may not have felt comfortable talking to a VA employee about their experience. It is also important to note that the small sample size included primarily male and White participants. In narrative inquiry, the number of participants is not as essential as diving into the depth of the interviews with the participants.

It is also important to note the position of the interviewer. As a White cisgender, heterosexual, middle-aged, middle class female who was raised in rural Kansas in a predominantly Protestant community, the positionality of the interviewer as a cocreator of the data inherently shaped and influenced the narratives created during this study. This contextual understanding of narratives created within the research relationship is an essential component to narrative inquiry and understanding.

Conclusions

Exploring these veterans’ narrative understanding of their experience of illness has many potential implications for health care systems, HCPs, and our military and veteran populations described in this article. Thinking about how the impact of racism, the influence of incentives to remain ill, and the complex intersection of identity and health brings light to how these domains may influence how people see themselves and engage in health care. These domains from these stories of the heart may help millions of people living with chronic illnesses like HF to not only live with their illness but inform how their experience is shaped by the systems surrounding them, including health care, government, and systems of power and oppression.

Heart failure (HF) is a costly and burdensome illness and is the top reason for hospital admissions for the US Department of Veterans Affairs (VA) and Medicare.¹ The cost of HF to the United States is estimated to grow to $3 billion annually by 2030.² People living with HF have a high symptom burden and poor quality of life.^3,4 Symptoms include shortness of breath, fatigue, depression, and decreases in psychosocial, existential, and spiritual well-being.^5-9

Veterans in the US are a unique cultural group with distinct contextual considerations around their experiences.¹⁰ Different groups of veterans require unique cultural considerations, such as the experiences of veterans who served during the Vietnam war and during Operation Iraqi Freedom/Operation Enduring Freedom (OIF/OEF). The extent of unmet needs of people living with HF, the number of veterans living with this illness, and the unique contextual components related to living with HF among veterans require further exploration into this illness experience for this distinct population. Research should explore innovative ways of managing both the number of people living with the illness and the significant impact of HF in people’s lives due to the high symptom burden and poor quality of life.³

This study used the model of adjustment to illness to explore the psychosocial adjustment to illness and the experience of US veterans living with HF, with a focus on the domains of meaning creation, self-schema, and world schema.¹¹ The model of adjustment to illness describes how people learn to adjust to living with an illness, which can lead to positive health outcomes. Meaning creation is defined as the process in which people create meaning from their experience living with illness. Self-schema is how people living with illness see themselves, and world schema is how people living with chronic illness see their place in the world. These domains shift as part of the adjustment to living with an illness described in this model.¹¹ This foundation allowed the investigators to explore the experience of living with HF among veterans with a focus on these domains. Our study aimed to cocreate illness narratives among veterans living with HF and to explore components of psychosocial adjustment informed by the model.

Methods

This study used narrative inquiry with a focus on illness narratives.^12-17 Narrative inquiry as defined by Catherine Riessman involves the generation of socially constructed and cocreated meanings between the researcher and narrator. The researcher is an active participant in narrative creation as the narrator chooses which events to include in the stories based on the social, historical, and cultural context of both the narrator (study participant) and audience (researcher). Riessman describes the importance of contextual factors and meaning creation as an important aspect of narrative inquiry.^12-14,16,17 It is important in narrative inquiry to consider how cultural, social, and historical factors influence narrative creation, constriction, and/or elimination.

This study prospectively created and collected data at a single time point. Semi-structured interviews explored psychosocial adjustment for people living with HF using an opening question modified from previous illness narrative research: Why do you think you got heart failure?¹⁸ Probes included the domains of psychosocial adjustment informed by the model of adjustment to illness domains (Figure). Emergent probes were used to illicit additional data around psychosocial adjustment to illness. Data were created and collected in accordance with narrative inquiry during the cocreation of the illness narratives between the researcher and study participants. This interview guide was tested by the first author in preliminary work to prepare for this study.

Allowing for emergent probes and acknowledging the role of the researcher as audience is key to the cocreation of narratives using this methodological framework. Narrators shape their narrative with the audience in mind; they cocreate their narrative with their audience using this type of narrative inquiry.^12,16 What the narrator chooses to include and exclude from their story provides a window into how they see themselves and their world.¹⁹ Audio recordings were used to capture data, allowing for the researcher to take contemporaneous notes exploring contextual considerations to the narrative cocreation process and to be used later in analysis. Analytic notes were completed during the interviews as well as later in analysis as part of the contextual reflection.

Setting

Research was conducted in the Rocky Mountain Regional VA Medical Center, Aurora, Colorado. Participants were recruited through the outpatient cardiology clinic where the interviews also took place. This study was approved through the Colorado Institutional Review Board and Rocky Mountain Regional VA Medical Center (IRB: 19-1064). Participants were identified by the treating cardiologist who was a part of the study team. Interested veterans were introduced to the first author who was stationed in an empty clinic room. The study cardiologist screened to ensure all participants were ≥ 18 years of age and had a diagnosis of HF for > 1 year. Persons with an impairment that could interfere with their ability to construct a narrative were also excluded.

Recruitment took place from October 2019 to January 2020. Three veterans refused participation. Five study participants provided informed consent and were enrolled and interviewed. All interviews were completed in the clinic at the time of consent per participant preference. One-hour long semi-structured interviews were conducted and audio recorded. A demographic form was administered at the end of each interview to capture contextual data. The researcher also kept a reflexive journal and audit trail.

Narrative Analysis

Riessman described general steps to conduct narrative analysis, including transcription, narrative clean-up, consideration of contextual factors, exploration of thematic threads, consideration of larger social narratives, and positioning.¹² The first author read transcripts while listening to the audio recordings to ensure accuracy. With narrative clean-up each narrative was organized to cocreate overall meaning, changed to protect anonymity, and refined to only include the illness narrative. For example, if a narrator told a story about childhood and then later in the interview remembered another detail to add to their story, narrative clean-up reordered events to make cohesive sense of the story. Demographic, historical, cultural, and social contexts of both the narrator and audience were reflected on during analysis to explore how these components may have shaped and influenced cocreation. Context was also considered within the larger VA setting.

Emergent themes were explored for convergence, divergence, and points of tension within and across each narrative. Larger social narratives were also considered for their influence on possible inclusion/exclusion of experience, such as how gender identity may have influenced study participants’ descriptions of their roles in social systems. These themes and narratives were then shared with our team, and we worked through decision points during the analysis process and discussed interpretation of the data to reach consensus.

Results

Five veterans living with HF were recruited and consented to participate in the study. Demographics of the participants and first author are included in the Table. Five illness narratives were cocreated, entitled: Blame the Cheese: Frank’s Illness Narrative; Love is Love: Bob’s Illness Narrative; The Brighter Things in Life is My Family: George’s Illness Narrative; We Never Know When Our Time is Coming: Bill’s Illness Narrative; and A Dream Deferred: Henry’s Illness Narrative.

Each narrative was explored focusing on the domains of the model of adjustment to illness. An emergent theme was also identified with multiple subthemes: being a veteran is unique. Related subthemes included: financial benefits, intersectionality of government and health care, the intersectionality of masculinity and military service, and the dichotomy of military experience.

The search for meaning creation after the experience of chronic illness emerged across interviews. One example of meaning creation was in Frank's illness narrative. Frank was unsure why he got HF: “Probably because I ate too much cheese…I mean, that’s gotta be it. It can’t be anything else.” By tying HF to his diet, he found meaning through his health behaviors.

Model of Adjustment to Illness

The narratives illustrate components of the model of adjustment to illness and describe how each of the participants either shifted their self-schema and world schema or reinforced their previously established schemas. It also demonstrates how people use narratives to create meaning and illness understanding from their illness experience, reflecting, and emphasizing different parts creating meaning from their experience.

A commonality across the narratives was a shift in self-schema, including the shift from being a provider to being reliant on others. In accordance with the dominant social narrative around men as providers, each narrator talked about their identity as a provider for themselves and their families. Often keeping their provider identity required modifications of the definition, from physical abilities and employment to financial security and stability. George made all his health care decisions based on his goal of providing for his family and protecting them from having to care for him: “I’m always thinking about the future, always trying to figure out how my family, if something should happen to me, how my family would cope, and how my family would be able to support themselves.” Bob’s health care goals were to stay alive long enough for his wife to get financial benefits as a surviving spouse: “That’s why I’m trying to make everything for her, you know. I’m not worried about myself. I’m not. Her I am, you know. And love is love.” Both of their health care decisions are shaped by their identity as a provider shifting to financial support.

Veteran Status

Being a veteran in the Veterans Health Administration (VHA) system impacted how a narrative understanding of illness was created. Veterans are a unique cultural population with aspects of their illness experience that are important to understand.¹⁰ Institutions such as the VA also enable and constrain components of narrative creation.²⁰ The illness narratives in this study were cocreated within the institutional setting of the VA. Part of the analysis included exploring how the institutional setting impacted the narrative creation. Emergent subthemes of the uniqueness of the veteran experience include financial benefits, intersectionality of government and health care, intersectionality of masculinity and military service, and the dichotomy of military experience.

In the US it is unique to the VA that the government both treats and assesses the severity of medical conditions to determine eligibility for health care and financial benefits. The VA’s financial benefits are intended to help compensate veterans who are experiencing illness as a result of their military experience.²¹ However, because the VA administers them the Veterans Benefits Administration and the VHA, veterans see both as interconnected. The perceived tie between illness severity and financial compensation could influence or bias how veterans understand their illness severity and experience. This may inadvertently encourage veterans to see their illness as being tied to their military service. This shaping of narratives should be considered as a contextual component as veterans obtain financial compensation and health insurance from the same larger organization that provides their health care and management.

George was a young man who during his service had chest pains and felt tired during physical training. He was surprised when his cardiologist explained his heart was enlarged. “All I know is when I initially joined the military, I was perfectly fine, you know, and when I was in the military, graduating, all that stuff, there was a glitch on the [electrocardiogram] they gave me after one day of doing [physical training] and then they’re like, oh, that’s fine. Come to find out it was mitral valve prolapse. And the doctors didn’t catch it then.” George feels the stress of the military caused his heart problems: “It wasn’t there before… so I’d have to say the strain from the military had to have caused it.” George’s medical history noted that he has a genetic connective tissue disorder that can lead to HF and likely was underlying cause of his illness. This example of how George pruned his narrative experience to highlight the cause as his military experience instead of a genetic disorder could have multiple financial and health benefits. The financial incentive for George to see his illness as caused by his military service could potentially bias his illness narrative to find his illness cause as tied to his service.

Government/Health Care Intersectionality

Veterans who may have experienced trust-breaking events with the government, like Agent Orange exposure or intergenerational racial trauma, may apply that experience to all government agencies. Bob felt the government had purposefully used him to create a military weapon. The army “knew I was angry and they used that for their advantage,” he said. Bob learned that he was exposed to Agent Orange in Vietnam, which is presumed to be associated with HF. Bob felt betrayed that the VHA had not figured out his health problems earlier. “I didn’t know anything about it until 6 months ago… Our government knew about it when they used it, and they didn’t care. They just wanted to win the war, and a whole lot of GIs like me suffered because of that, and I was like my government killed me? And I was fighting for them?”

Henry learned to distrust the government and the health care system because of a long history of systematic oppression and exploitation. These institutions’ erosion of trust has impact beyond the trust-breaking event itself but reverberates into how communities view organizations and institutions for generations. For Black Americans, who have historically been experimented on without consent by the US government and health care systems, this can make it especially hard to trust and build working relationships with those institutions. Health care professionals (HCPs) need to build collaborative partnerships with patients to provide effective care while understanding why some patients may have difficulty trusting health care systems, especially government-led systems.

The nature of HF as an illness can also make it difficult to predict and manage.²² This uncertainty and difficulty in managing HF can make it especially hard for people to establish trust with their HCPs whom they want to see as experts in their illness. HCPs in these narratives were often portrayed as incompetent or neglectful. The unpredictable nature of the illness itself was not reflected in the narrator’s experience.

Masculinity/Military Service Intersectionality

For the veteran narrators, tied into the identity of being a provider are social messages about masculinity. There is a unique intersectionality of being a man, the military culture, and living with chronic illnesses. Dominant social messages around being a man include being tough, not expressing emotion, self-reliance, and having power. This overlaps with social messages on military culture, including self-reliance, toughness, persistence in the face of adversity, limited expression of emotions, and the recognition of power and respect.²³

People who internalize these social messages on masculinity may be less likely to access mental health treatment.²³ This stigmatizing barrier to mental health treatment could impact how positive narratives are constructed around the experience of chronic illness for narrators who identify as masculine. Military and masculine identity could exclude or constrain stories about a veteran who did not “solider on” or who had to rely on others in a team to get things done. This shift can especially impact veterans experiencing chronic illnesses like HF, which often impact their physical abilities. Veterans may feel pressured to think of and portray themselves as being strong by limiting their expression of pain and other symptoms to remain in alignment with the dominant narrative. By not being open about the full experience of their illness both positive and negative, veterans may have unaddressed aspects of their illness experience or HCPs may not be able have all the information they need before the concern becomes a more serious health problem.

Dichotomy of Military Experience

Some narrators in this study talked about their military experience as both traumatic and beneficial. These dichotomous viewpoints can be difficult for veterans to construct a narrative understanding around. How can an inherently painful potentially traumatic experience, such as war, have benefits? This way of looking at the world may require a large narrative shift in their world and self-schemas to accept.

Bob hurt people in Vietnam as part of his job. “I did a lot of killing.” Bob met a village elder who stopped him from hurting people in the village and “in my spare time, I would go back to the village and he would teach me, how to be a better man,” Bob shared. “He taught me about life and everything, and he was awesome, just to this day, he’s like a father to me.” Bob tried to change his life and learned how to live a life full of love and care because of his experience in Vietnam. Though Bob hurt a lot of people in Vietnam, which still haunts him, he found meaning through his life lessons from the village elder. “I’m ashamed of what I did in Vietnam. I did some really bad stuff, but ever since then, I’ve always tried to do good to help people.”

Discussion

Exploring a person’s illness experience from a truly holistic pathway allows HCPs to see how the ripples of illness echo into the interconnection of surrounding systems and even across time. These stories suggest that veterans may experience their illness and construct their illness narratives based on the distinct contextual considerations of veteran culture.¹⁰ Research exploring how veterans see their illness and its potential impact on their health care access and choices could benefit from exploration into narrative understanding and meaning creation as a potentially contributing factor to health care decision making. As veterans are treated across health care systems, this has implications not only for VHA care, but community care as well.

These narratives also demonstrate how veterans create health care goals woven into their narrative understanding of their illness and its cause, lending insight into understanding health care decision making. This change in self-schema shapes how veterans see themselves and their role which shapes other aspects of their health care. These findings also contribute to our understanding of meaning creation. By exploring meaning making and narrative understanding, this work adds to our knowledge of the importance of spirituality as a component of the holistic experience of illness. There have been previous studies exploring the spiritual aspects of HF and the importance of meaning making.^24,25 Exploring meaning making as an aspect of illness narratives can have important implications. Future research could explore the connections between meaning creation and illness narratives.

Limitations

The sample of veterans who participated in this study and are not generalizable to all veteran populations. The sample also only reflects people who were willing to participate and may exclude experience of people who may not have felt comfortable talking to a VA employee about their experience. It is also important to note that the small sample size included primarily male and White participants. In narrative inquiry, the number of participants is not as essential as diving into the depth of the interviews with the participants.

It is also important to note the position of the interviewer. As a White cisgender, heterosexual, middle-aged, middle class female who was raised in rural Kansas in a predominantly Protestant community, the positionality of the interviewer as a cocreator of the data inherently shaped and influenced the narratives created during this study. This contextual understanding of narratives created within the research relationship is an essential component to narrative inquiry and understanding.

Conclusions

Exploring these veterans’ narrative understanding of their experience of illness has many potential implications for health care systems, HCPs, and our military and veteran populations described in this article. Thinking about how the impact of racism, the influence of incentives to remain ill, and the complex intersection of identity and health brings light to how these domains may influence how people see themselves and engage in health care. These domains from these stories of the heart may help millions of people living with chronic illnesses like HF to not only live with their illness but inform how their experience is shaped by the systems surrounding them, including health care, government, and systems of power and oppression.

Appendiceal mucinous neoplasms (AMNs) are rare tumors of the appendix that can be asymptomatic or present with acute right lower quadrant (RLQ) pain mimicking appendicitis. Due to their potential to cause either no symptoms or nonspecific symptoms, such as abdominal pain, nausea, or vomiting, AMNs are often found incidentally during appendectomies or, even more rarely, colonoscopies. Most AMNs grow slowly and have little metastatic potential. However, due to potential complications, such as bowel obstruction and rupture, timely detection and removal of AMN is essential. We describe the case of a patient who appeared to have acute appendicitis complicated by rupture on imaging who was found instead to have a perforated low-grade AMN during surgery.

Case Presentation

A male patient aged 72 years with a history of type 2 diabetes mellitus, hypertension, and aortic stenosis, but no prior abdominal surgery, presented with a chief concern of generalized weakness. As part of the workup for his weakness, a computed tomography (CT) scan of the abdomen was performed which showed an RLQ phlegmon and mild fat stranding in the area. Imaging also revealed an asymptomatic gallstone measuring 1.5 cm with no evidence of cholecystitis. The patient had no fever and reported no abdominal pain, nausea, vomiting, or change in bowel habits. On physical examination, the patient’s abdomen was soft, nontender, and nondistended with normoactive bowel sounds and no rebound or guarding.

To manage the appendicitis, the patient started a 2-week course of amoxicillin clavulanate 875 mg twice daily and was instructed to schedule an interval appendectomy in the coming months. Four days later, during a follow-up with his primary care physician, he was found to be asymptomatic. However, at this visit his stool was found to be positive for occult blood. Given this finding and the lack of a previous colonoscopy, the patient underwent a colonoscopy, which revealed bulging at the appendiceal orifice, consistent with an inverted appendix. Portions of the appendix were biopsied (Figure 1). Histologic analysis of the appendiceal biopsies revealed no dysplasia or malignancy. The colonoscopy also revealed an 8-mm sessile polyp in the ascending colon which was resected, and histologic analysis of this polyp revealed a low-grade tubular adenoma. Additionally, a large angiodysplastic lesion was found in the ascending colon as well as external and medium-sized internal hemorrhoids.

Histologic specimens of the appendix were notable for evidence of perforation and neoplasia leading to a diagnosis of low-grade AMN. The presence of atypical mucinous epithelial cells on the serosal surface of the appendix, confirmed with a positive pancytokeratin stain, provided histologic evidence of appendiceal perforation (Figure 3). The presence of nuclear atypia demonstrated that the appendix was involved by a neoplastic process. Additionally, attenuation of the normal appendiceal epithelium, evidence of a chronic process, further helped to differentiate the AMN from complicated appendicitis. The presence of mucin involving the serosa of the appendix led to the classification of this patient’s neoplasm as grade pT4a. Of note, histologic examination demonstrated that the surgical margins contained tumor cells.

Discussion

AMNs are rare tumors with an annual age-adjusted incidence of approximately 0.12 per 1,000,000 people.¹ These neoplasms can present as acute or chronic abdominal pain, gastrointestinal bleeding, intestinal obstruction, or acute abdomen.^2-4 Most AMNs, however, are asymptomatic and are usually found incidentally during appendectomies for appendicitis, and can even be found during colonoscopies,such as in this case.^5,6

Low-grade AMNs are distinguished from appendiceal mucinous adenocarcinomas by their lack of wall invasion.⁷ Additionally, low-grade AMNs have a very good prognosis as even neoplasms that have spread outside of the appendix have a 5-year overall survival rate of 79 to 86%.⁸ These low-grade neoplasms also have extremely low rates of recurrence after resection.⁹ In contrast, appendiceal mucinous adenocarcinomas have a much worse prognosis with a 5-year overall survival rate of 53.6%.¹⁰

Conclusions

AMNs can present with nonspecific symptoms or can be completely asymptomatic and are often found incidentally during colonoscopies or appendectomies for acute appendicitis. While it is true that AMNs have low metastatic potential and grow slowly, AMNs can rupture leading to pseudomyxoma peritonei or even cause bowel obstruction warranting timely identification and removal of these neoplasms. Laparoscopic evaluation in cases of ruptured appendices is critical not only for treatment, but also for determining the presence of a potential underlying appendiceal malignancy. Although AMNs are a rare pathology, physicians should still consider the possibility of these neoplasms even when imaging findings suggest appendicitis. Having AMNs as part of the differential diagnosis is especially necessary in cases, such as this one, in which the patient has appendiceal inversion, is aged > 50 years, and has concurrent colorectal neoplasms.

Appendiceal mucinous neoplasms (AMNs) are rare tumors of the appendix that can be asymptomatic or present with acute right lower quadrant (RLQ) pain mimicking appendicitis. Due to their potential to cause either no symptoms or nonspecific symptoms, such as abdominal pain, nausea, or vomiting, AMNs are often found incidentally during appendectomies or, even more rarely, colonoscopies. Most AMNs grow slowly and have little metastatic potential. However, due to potential complications, such as bowel obstruction and rupture, timely detection and removal of AMN is essential. We describe the case of a patient who appeared to have acute appendicitis complicated by rupture on imaging who was found instead to have a perforated low-grade AMN during surgery.

Case Presentation

A male patient aged 72 years with a history of type 2 diabetes mellitus, hypertension, and aortic stenosis, but no prior abdominal surgery, presented with a chief concern of generalized weakness. As part of the workup for his weakness, a computed tomography (CT) scan of the abdomen was performed which showed an RLQ phlegmon and mild fat stranding in the area. Imaging also revealed an asymptomatic gallstone measuring 1.5 cm with no evidence of cholecystitis. The patient had no fever and reported no abdominal pain, nausea, vomiting, or change in bowel habits. On physical examination, the patient’s abdomen was soft, nontender, and nondistended with normoactive bowel sounds and no rebound or guarding.

To manage the appendicitis, the patient started a 2-week course of amoxicillin clavulanate 875 mg twice daily and was instructed to schedule an interval appendectomy in the coming months. Four days later, during a follow-up with his primary care physician, he was found to be asymptomatic. However, at this visit his stool was found to be positive for occult blood. Given this finding and the lack of a previous colonoscopy, the patient underwent a colonoscopy, which revealed bulging at the appendiceal orifice, consistent with an inverted appendix. Portions of the appendix were biopsied (Figure 1). Histologic analysis of the appendiceal biopsies revealed no dysplasia or malignancy. The colonoscopy also revealed an 8-mm sessile polyp in the ascending colon which was resected, and histologic analysis of this polyp revealed a low-grade tubular adenoma. Additionally, a large angiodysplastic lesion was found in the ascending colon as well as external and medium-sized internal hemorrhoids.

Histologic specimens of the appendix were notable for evidence of perforation and neoplasia leading to a diagnosis of low-grade AMN. The presence of atypical mucinous epithelial cells on the serosal surface of the appendix, confirmed with a positive pancytokeratin stain, provided histologic evidence of appendiceal perforation (Figure 3). The presence of nuclear atypia demonstrated that the appendix was involved by a neoplastic process. Additionally, attenuation of the normal appendiceal epithelium, evidence of a chronic process, further helped to differentiate the AMN from complicated appendicitis. The presence of mucin involving the serosa of the appendix led to the classification of this patient’s neoplasm as grade pT4a. Of note, histologic examination demonstrated that the surgical margins contained tumor cells.

Discussion

AMNs are rare tumors with an annual age-adjusted incidence of approximately 0.12 per 1,000,000 people.¹ These neoplasms can present as acute or chronic abdominal pain, gastrointestinal bleeding, intestinal obstruction, or acute abdomen.^2-4 Most AMNs, however, are asymptomatic and are usually found incidentally during appendectomies for appendicitis, and can even be found during colonoscopies,such as in this case.^5,6

Low-grade AMNs are distinguished from appendiceal mucinous adenocarcinomas by their lack of wall invasion.⁷ Additionally, low-grade AMNs have a very good prognosis as even neoplasms that have spread outside of the appendix have a 5-year overall survival rate of 79 to 86%.⁸ These low-grade neoplasms also have extremely low rates of recurrence after resection.⁹ In contrast, appendiceal mucinous adenocarcinomas have a much worse prognosis with a 5-year overall survival rate of 53.6%.¹⁰

Conclusions

AMNs can present with nonspecific symptoms or can be completely asymptomatic and are often found incidentally during colonoscopies or appendectomies for acute appendicitis. While it is true that AMNs have low metastatic potential and grow slowly, AMNs can rupture leading to pseudomyxoma peritonei or even cause bowel obstruction warranting timely identification and removal of these neoplasms. Laparoscopic evaluation in cases of ruptured appendices is critical not only for treatment, but also for determining the presence of a potential underlying appendiceal malignancy. Although AMNs are a rare pathology, physicians should still consider the possibility of these neoplasms even when imaging findings suggest appendicitis. Having AMNs as part of the differential diagnosis is especially necessary in cases, such as this one, in which the patient has appendiceal inversion, is aged > 50 years, and has concurrent colorectal neoplasms.

Appendiceal mucinous neoplasms (AMNs) are rare tumors of the appendix that can be asymptomatic or present with acute right lower quadrant (RLQ) pain mimicking appendicitis. Due to their potential to cause either no symptoms or nonspecific symptoms, such as abdominal pain, nausea, or vomiting, AMNs are often found incidentally during appendectomies or, even more rarely, colonoscopies. Most AMNs grow slowly and have little metastatic potential. However, due to potential complications, such as bowel obstruction and rupture, timely detection and removal of AMN is essential. We describe the case of a patient who appeared to have acute appendicitis complicated by rupture on imaging who was found instead to have a perforated low-grade AMN during surgery.

Case Presentation

A male patient aged 72 years with a history of type 2 diabetes mellitus, hypertension, and aortic stenosis, but no prior abdominal surgery, presented with a chief concern of generalized weakness. As part of the workup for his weakness, a computed tomography (CT) scan of the abdomen was performed which showed an RLQ phlegmon and mild fat stranding in the area. Imaging also revealed an asymptomatic gallstone measuring 1.5 cm with no evidence of cholecystitis. The patient had no fever and reported no abdominal pain, nausea, vomiting, or change in bowel habits. On physical examination, the patient’s abdomen was soft, nontender, and nondistended with normoactive bowel sounds and no rebound or guarding.

To manage the appendicitis, the patient started a 2-week course of amoxicillin clavulanate 875 mg twice daily and was instructed to schedule an interval appendectomy in the coming months. Four days later, during a follow-up with his primary care physician, he was found to be asymptomatic. However, at this visit his stool was found to be positive for occult blood. Given this finding and the lack of a previous colonoscopy, the patient underwent a colonoscopy, which revealed bulging at the appendiceal orifice, consistent with an inverted appendix. Portions of the appendix were biopsied (Figure 1). Histologic analysis of the appendiceal biopsies revealed no dysplasia or malignancy. The colonoscopy also revealed an 8-mm sessile polyp in the ascending colon which was resected, and histologic analysis of this polyp revealed a low-grade tubular adenoma. Additionally, a large angiodysplastic lesion was found in the ascending colon as well as external and medium-sized internal hemorrhoids.

Histologic specimens of the appendix were notable for evidence of perforation and neoplasia leading to a diagnosis of low-grade AMN. The presence of atypical mucinous epithelial cells on the serosal surface of the appendix, confirmed with a positive pancytokeratin stain, provided histologic evidence of appendiceal perforation (Figure 3). The presence of nuclear atypia demonstrated that the appendix was involved by a neoplastic process. Additionally, attenuation of the normal appendiceal epithelium, evidence of a chronic process, further helped to differentiate the AMN from complicated appendicitis. The presence of mucin involving the serosa of the appendix led to the classification of this patient’s neoplasm as grade pT4a. Of note, histologic examination demonstrated that the surgical margins contained tumor cells.

Discussion

AMNs are rare tumors with an annual age-adjusted incidence of approximately 0.12 per 1,000,000 people.¹ These neoplasms can present as acute or chronic abdominal pain, gastrointestinal bleeding, intestinal obstruction, or acute abdomen.^2-4 Most AMNs, however, are asymptomatic and are usually found incidentally during appendectomies for appendicitis, and can even be found during colonoscopies,such as in this case.^5,6

Low-grade AMNs are distinguished from appendiceal mucinous adenocarcinomas by their lack of wall invasion.⁷ Additionally, low-grade AMNs have a very good prognosis as even neoplasms that have spread outside of the appendix have a 5-year overall survival rate of 79 to 86%.⁸ These low-grade neoplasms also have extremely low rates of recurrence after resection.⁹ In contrast, appendiceal mucinous adenocarcinomas have a much worse prognosis with a 5-year overall survival rate of 53.6%.¹⁰

Conclusions

AMNs can present with nonspecific symptoms or can be completely asymptomatic and are often found incidentally during colonoscopies or appendectomies for acute appendicitis. While it is true that AMNs have low metastatic potential and grow slowly, AMNs can rupture leading to pseudomyxoma peritonei or even cause bowel obstruction warranting timely identification and removal of these neoplasms. Laparoscopic evaluation in cases of ruptured appendices is critical not only for treatment, but also for determining the presence of a potential underlying appendiceal malignancy. Although AMNs are a rare pathology, physicians should still consider the possibility of these neoplasms even when imaging findings suggest appendicitis. Having AMNs as part of the differential diagnosis is especially necessary in cases, such as this one, in which the patient has appendiceal inversion, is aged > 50 years, and has concurrent colorectal neoplasms.

Caregiving for a person with dementia in the community can be extremely difficult work. Much of this work falls on unpaid or informal caregivers. Sixty-three percent of older adults with dementia depend completely on unpaid caregivers, and an additional 26% receive some combination of paid and unpaid support, together comprising nearly 90% of the more than 3 million older Americans with dementia.¹ In-home care is preferable for these patients. For veterans, the Caregiver Support Program (CSP) is the only US Department of Veterans Affairs (VA) program that exclusively supports caregivers. Although the CSP is not a nursing home diversion or cost savings program, successfully enabling at-home living in lieu of facility living also has the potential to reduce overall cost of care, and most importantly, to enable veterans who desire it to age at home.^2,3

The CSP has 2 unique programs for caregivers of eligible veterans. The Program of General Caregiver Support Services (PGCSS) provides resources, education, and support to caregivers of all veterans enrolled in the Veterans Health Administration (VHA). The Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides education and training, access to health care insurance if eligible, mental health counseling, access to a monthly caregiver stipend, enhanced respite care, wellness contacts, and travel compensation for VA health care appointments (Table 1).^4,5

Patients undergo a rigorous assessment and highly specialized and individualized clinical decision-making process to confirm the service is appropriate for the patient. PCAFC was restructured and expanded on October 1, 2020.⁶ Currently, veterans who incurred or aggravated a serious injury (defined by a single or combined service-connection rating of ≥ 70%) in active military service before May 8, 1975, or after September 10, 2001, are eligible for PCAFC.⁶ Most notably, these changes opened eligibility in the PCAFC to caregivers of veterans from the Vietnam, Korean, and World War II eras of conflict and veterans with dependence in activities of daily living (ADL) due to a wider variety of illnesses, including dementia.⁶ The PCAFC is set to further expand to caregivers of otherwise eligible veterans of all eras of service on October 1, 2022, 2 years after the initial expansion, as laid out in the 2018 VA MISSION Act.⁶ Additional information on the history of the PGCSS and PCAFC and eligibility criteria for veterans and their family caregivers can be found in Tables 2 and 3.

Case Presentation

A male combat veteran presented to his primary care practitioner (PCP) with concerns of several years of progressive changes in gait, forgetfulness, and a gradual decline in the ability to live independently without assistance. At that time, his medical history was notable for PTSD (50% service connection), which had been diagnosed over a decade prior (but for which the veteran had refused medication or therapy on multiple occasions, stating he preferred to “breathe through” his intrusive symptom flare-ups), localized prostate cancer with a radical prostatectomy (100% service connection), multiple kidney stones with persistent left ureteral inflammation, and arteriosclerotic heart disease (10% service connection). A Saint Louis University Mental Status Exam (SLUMS) performed by the PCP was notable for a score of 9/30, in the dementia range. A computed tomography of the brain demonstrated scattered foci of hypoattenuation attributable to normal aging without any other pathology noted.

The veteran was referred to the Cognitive Care clinic, a local longitudinal multidisciplinary dementia care clinic, along with his spouse/caregiver. Cognitive testing was performed by a licensed clinical psychologist in the clinic and was notable for a Mini-Mental State Exam (MMSE) score of 18/30, also in the dementia range, and a more robust neuropsychiatric battery demonstrated borderline intact memory and language function but impairments in executive function and visuospatial skills. The patient’s clinical history included functional loss over time, with total dependence in instrumental activities of daily living (IADL), or tasks necessary to be fully independent or manage a household, including inability to manage finances, and some need for assistance in ADL, or personal care tasks such as dressing or grooming, including bathing. Physical examination was notable for bradykinesia, a shuffling gait, and rare episodes of speaking to someone who was not in the room, thought to be due to mild nondistressing hallucinations.

A diagnosis of LBD was made. At time of diagnosis, the patient met criteria for probable dementia with Lewy bodies, with 2 of 4 core clinical features (hallucinations and Parkinsonism), and multiple supportive features (gait disturbance, sensory disturbance, and altered mood).^10,11 The veteran continued to develop more supportive features for diagnosis of LBD over time, including evidence of autonomic instability.

The veteran and his caregiver were educated on his diagnosis, and longitudinal support was offered. The veteran was no longer driving, and due to the severity of his symptoms, the importance of driving cessation was reinforced by the care team. Over the course of the next year, his illness progressed, with more frequent behaviors and psychological symptoms of dementia (BPSD). He began to exhibit nighttime wandering throughout the house and became more anxious and restless during the day. He lost the ability to make his own health care decisions, and his spouse became his activated health care power of attorney (HCPOA). His BPSD became more disruptive to daily life and was accompanied by a change in the character of his hallucinations, with prior nondistressing visions of other people being replaced with visions of war, burning bodies, and violence, much of it related to combat experiences in Vietnam. The BPSD began to include hiding behind furniture, running out of the house, and shouting and crying in response to hallucinations. At times, his BPSD became violent, lashing out in fear against his hallucinations and caregiver.

The veteran’s change in BPSD was concerning for a new baseline, rather than being clearly related to an underlying unmet physical need, such as pain, hunger, sleep, or discomfort. Multiple hospital admissions during that year involved IV hydration and treatment for urinary tract infections (UTI) for several days of inpatient stay at a time, but these behaviors persisted despite infection treatment and hydration. The patient’s changes in BPSD were thought to be secondary to uncovered and intensified PTSD in the setting of progressive dementia. Due to the clear danger the patient posed to himself and others, potential treatment options for these PTSD-related hallucinations were discussed with his caregiver. The caregiver shared that the patient’s BPSD and hallucinations were so distressing that “he would never want to live like this,” and that things had progressed to the point that “he has no quality of life.”

Oral aripiprazole 2 mg twice daily was prescribed after the risks of infection, cardiac complications, and exacerbation of movement disorder symptoms, such as increased stiffness and falls, were discussed with the caregiver. The caregiver was employed and relied on continued employment for income, but the patient could not be safely left alone. As the patient and his caregiver had reached a crisis point and living at home no longer appeared to be safe, the patient was referred to a VA-contracted skilled nursing facility (SNF) for long-term care. The patient’s caregiver was also referred to CSP for support during this transition. Due to the patient’s level of service connection and personal needs, as well as the patient and caregiver’s preference for the veteran to remain in his home, they were evaluated for the PCAFC for enhanced support to enable home as an alternative to facility living, should the patient respond to the antipsychotic therapy sufficiently, which was evaluated on a regular basis.

After several months, the patient’s BPSD had improved significantly, and he was no longer experiencing distressing hallucinations. However, his mobility also declined, and he became fully dependent in most ADL, including transfers, hygiene, and toileting. Due to the COVID-19 pandemic, visitation was limited, which was difficult for both the patient and his caregiver. The veteran and caregiver were approved for PCAFC due to the veteran’s combination of service-connected illnesses > 70%, dependence for most ADLs, and need for continuous supervision. A transfer home from the SNF was arranged.

The PCAFC allowed the veteran’s caregiver and family members to provide in-home full-time caregiving, as an alternative to facility placement. The caregiver received a variety of support, including access to peer support, instruction on ways to assist in his toileting, hygiene, and transfers, and a caregiving stipend. In addition to offsetting lost wages, the stipend also helped offset the cost of care supplies which were not provided or were not readily available from the VA, which at the time included the patient’s preferred nutritional supplement and some supplies for personal care.

The veteran’s care needs continued to escalate. A fall at home resulted in a hip fracture, which was treated with surgical pinning. Postfracture physical therapy in a facility was considered, but ultimately was provided at home. The patient also experienced multiple UTIs and resulting delirium, with accompanying agitation and hallucinations. These episodes improved with IV antibiotics and hydration during short hospital stays. Ultimately, a computed tomography demonstrated overflow incontinence likely related to urologic damage from prior kidney stones and stent placement was recommended.

Visiting skilled nurses for the patient’s area were difficult to coordinate but were eventually arranged. The patient continued residing in his home with the support of his caregiver, the PCAFC, and the local VA medical center geriatric and transitional care services. The patient was also referred to the palliative care outpatient specialty clinic for discussion of goals of care and assistance with advance care planning as his illness progressed. Mental health and geriatric psychiatry consult teams were considered for this case but not utilized.

Discussion

Older adult Americans are at high risk of poor financial wellbeing, with nearly one quarter of Americans aged > 62 years experiencing financial insecurity.¹² Even in this case with health care provided by the VA, successful in-home care was challenging and required a dedicated live-in caregiver, care coordination resources, and financial support. As part of its mission of caring for veterans, the VA has instituted CSP, whose mission is to promote the health and well-being of family caregivers through education, support, and services.

PCAFC offers enhanced clinical support for caregivers of eligible veterans who are seriously injured. This includes resources, education, support, financial stipends, health insurance (if eligible), and beneficiary travel (if eligible) to primary caregivers of eligible veterans. PCAFC was originally reserved for veterans who had onset of service-related disability after September 11, 2001, with an associated personal care need. In this population, PCAFC demonstrated an increased usage of clinical resources, likely related to increased ease in accessing care.¹³

The cohort of post-9/11 veterans is very different from the cohort of veterans and their caregivers who may now qualify for the PCAFC after its October 2020 expansion. Veterans from the Vietnam, Korean, and World War II eras of conflict have rates of service-connected disability 2 to 3 times higher than those of post-9/11 era veterans and are at greater risk for dementia.⁹ Veterans aged ≥ 75 years who have service connection also report higher rates of difficulty with independent living and self-care compared with their younger peers.⁹ Since dementia and PTSD are common causes of service connection and disability it is likely that a significant proportion of older veterans will be eligible to apply for the newly expanded PCAFC.

To be eligible for PCAFC, a veteran must have a service-connected disability rating of ≥ 70% and must need in-person care services for ≥ 6 continuous months, based on either an inability to perform an ADL, or a need for supervision, protection, or instruction. PGCSS and PCAFC also may improve access to dementia-specific resources and care. These programs jointly improve access to care, clinical and community resources, and support, and serve to further support in-home care with consistent caregivers who have known the veterans for decades as an alternative to SNF care, as they did in this case. Although in-home care with appropriate support has not been found to be clinically superior, it has been found to be noninferior to SNF living for older adults.¹⁴ More familiar environments and caregivers such as those at home may also reduce the risk of long-term adverse outcomes such as delirium and falls, but there is still more research to be done to examine the ultimate clinical impact of aging in place for people with dementia. Most importantly, for many veterans and their family caregivers, living at home is preferable to SNF care, but may prove especially challenging in the context of advanced-stage dementia without CSP support.

It is not clear how CSP use or increased access to PCAFC will impact costs. However, the PCAFC monthly stipend is scaled to the median wage of a home health aide and to the location of the caregiver, which is considerably less than the cost of recurrent hospitalization or a year of facility-level care.¹⁵ The CSP may eventually be a successful long-term investment in cost savings. In order to ensure the process for PCAFC approval is uniform and prompt as the program expands, CSP has restructured, increasing the number of employees, improving the patient review process, and expanding staff training.¹⁶ The VA plans to continually re-assess CSP using the infrastructure of the Caregiver Record Management Application as it continues to expand.¹⁷

Conclusions

Dementia and PTSD commonly coexist and are a significant source of disability in the service-connected veteran population. This case brings attention to the recent expansion of PCAFC, which now has the potential to support eligible veterans from the World War II, Korean, and Vietnam-era conflicts, in whom these illnesses are more common. In this case, in-home care was preferred by the veteran and primary caregiver but would not have been possible without a complex intervention. There is still more research to be done on the best way to meet the needs of older adults with dementia, the impact of in-home care, and the system-wide implications of PCAFC, especially as the program grows. However, in-home care is preferable to SNF living for many veterans and caregivers, and CSP will continue to be an essential element of providing care for this population.

Acknowledgments

This material is the result of work supported with resources and the use of facilities at the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. The authors would also like to thank the members of the Veterans Affairs Central Office and National Caregiver Support Program Office, including Elyse Kaplan, Melinda Hogue, Beth Wolfsohn, Colleen Richardson, and Timothy Jobin, for their thorough review of the work and edits to ensure accurate program description.

Caregiving for a person with dementia in the community can be extremely difficult work. Much of this work falls on unpaid or informal caregivers. Sixty-three percent of older adults with dementia depend completely on unpaid caregivers, and an additional 26% receive some combination of paid and unpaid support, together comprising nearly 90% of the more than 3 million older Americans with dementia.¹ In-home care is preferable for these patients. For veterans, the Caregiver Support Program (CSP) is the only US Department of Veterans Affairs (VA) program that exclusively supports caregivers. Although the CSP is not a nursing home diversion or cost savings program, successfully enabling at-home living in lieu of facility living also has the potential to reduce overall cost of care, and most importantly, to enable veterans who desire it to age at home.^2,3

The CSP has 2 unique programs for caregivers of eligible veterans. The Program of General Caregiver Support Services (PGCSS) provides resources, education, and support to caregivers of all veterans enrolled in the Veterans Health Administration (VHA). The Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides education and training, access to health care insurance if eligible, mental health counseling, access to a monthly caregiver stipend, enhanced respite care, wellness contacts, and travel compensation for VA health care appointments (Table 1).^4,5

Patients undergo a rigorous assessment and highly specialized and individualized clinical decision-making process to confirm the service is appropriate for the patient. PCAFC was restructured and expanded on October 1, 2020.⁶ Currently, veterans who incurred or aggravated a serious injury (defined by a single or combined service-connection rating of ≥ 70%) in active military service before May 8, 1975, or after September 10, 2001, are eligible for PCAFC.⁶ Most notably, these changes opened eligibility in the PCAFC to caregivers of veterans from the Vietnam, Korean, and World War II eras of conflict and veterans with dependence in activities of daily living (ADL) due to a wider variety of illnesses, including dementia.⁶ The PCAFC is set to further expand to caregivers of otherwise eligible veterans of all eras of service on October 1, 2022, 2 years after the initial expansion, as laid out in the 2018 VA MISSION Act.⁶ Additional information on the history of the PGCSS and PCAFC and eligibility criteria for veterans and their family caregivers can be found in Tables 2 and 3.

Case Presentation

A male combat veteran presented to his primary care practitioner (PCP) with concerns of several years of progressive changes in gait, forgetfulness, and a gradual decline in the ability to live independently without assistance. At that time, his medical history was notable for PTSD (50% service connection), which had been diagnosed over a decade prior (but for which the veteran had refused medication or therapy on multiple occasions, stating he preferred to “breathe through” his intrusive symptom flare-ups), localized prostate cancer with a radical prostatectomy (100% service connection), multiple kidney stones with persistent left ureteral inflammation, and arteriosclerotic heart disease (10% service connection). A Saint Louis University Mental Status Exam (SLUMS) performed by the PCP was notable for a score of 9/30, in the dementia range. A computed tomography of the brain demonstrated scattered foci of hypoattenuation attributable to normal aging without any other pathology noted.

The veteran was referred to the Cognitive Care clinic, a local longitudinal multidisciplinary dementia care clinic, along with his spouse/caregiver. Cognitive testing was performed by a licensed clinical psychologist in the clinic and was notable for a Mini-Mental State Exam (MMSE) score of 18/30, also in the dementia range, and a more robust neuropsychiatric battery demonstrated borderline intact memory and language function but impairments in executive function and visuospatial skills. The patient’s clinical history included functional loss over time, with total dependence in instrumental activities of daily living (IADL), or tasks necessary to be fully independent or manage a household, including inability to manage finances, and some need for assistance in ADL, or personal care tasks such as dressing or grooming, including bathing. Physical examination was notable for bradykinesia, a shuffling gait, and rare episodes of speaking to someone who was not in the room, thought to be due to mild nondistressing hallucinations.

A diagnosis of LBD was made. At time of diagnosis, the patient met criteria for probable dementia with Lewy bodies, with 2 of 4 core clinical features (hallucinations and Parkinsonism), and multiple supportive features (gait disturbance, sensory disturbance, and altered mood).^10,11 The veteran continued to develop more supportive features for diagnosis of LBD over time, including evidence of autonomic instability.

The veteran and his caregiver were educated on his diagnosis, and longitudinal support was offered. The veteran was no longer driving, and due to the severity of his symptoms, the importance of driving cessation was reinforced by the care team. Over the course of the next year, his illness progressed, with more frequent behaviors and psychological symptoms of dementia (BPSD). He began to exhibit nighttime wandering throughout the house and became more anxious and restless during the day. He lost the ability to make his own health care decisions, and his spouse became his activated health care power of attorney (HCPOA). His BPSD became more disruptive to daily life and was accompanied by a change in the character of his hallucinations, with prior nondistressing visions of other people being replaced with visions of war, burning bodies, and violence, much of it related to combat experiences in Vietnam. The BPSD began to include hiding behind furniture, running out of the house, and shouting and crying in response to hallucinations. At times, his BPSD became violent, lashing out in fear against his hallucinations and caregiver.

The veteran’s change in BPSD was concerning for a new baseline, rather than being clearly related to an underlying unmet physical need, such as pain, hunger, sleep, or discomfort. Multiple hospital admissions during that year involved IV hydration and treatment for urinary tract infections (UTI) for several days of inpatient stay at a time, but these behaviors persisted despite infection treatment and hydration. The patient’s changes in BPSD were thought to be secondary to uncovered and intensified PTSD in the setting of progressive dementia. Due to the clear danger the patient posed to himself and others, potential treatment options for these PTSD-related hallucinations were discussed with his caregiver. The caregiver shared that the patient’s BPSD and hallucinations were so distressing that “he would never want to live like this,” and that things had progressed to the point that “he has no quality of life.”

Oral aripiprazole 2 mg twice daily was prescribed after the risks of infection, cardiac complications, and exacerbation of movement disorder symptoms, such as increased stiffness and falls, were discussed with the caregiver. The caregiver was employed and relied on continued employment for income, but the patient could not be safely left alone. As the patient and his caregiver had reached a crisis point and living at home no longer appeared to be safe, the patient was referred to a VA-contracted skilled nursing facility (SNF) for long-term care. The patient’s caregiver was also referred to CSP for support during this transition. Due to the patient’s level of service connection and personal needs, as well as the patient and caregiver’s preference for the veteran to remain in his home, they were evaluated for the PCAFC for enhanced support to enable home as an alternative to facility living, should the patient respond to the antipsychotic therapy sufficiently, which was evaluated on a regular basis.

After several months, the patient’s BPSD had improved significantly, and he was no longer experiencing distressing hallucinations. However, his mobility also declined, and he became fully dependent in most ADL, including transfers, hygiene, and toileting. Due to the COVID-19 pandemic, visitation was limited, which was difficult for both the patient and his caregiver. The veteran and caregiver were approved for PCAFC due to the veteran’s combination of service-connected illnesses > 70%, dependence for most ADLs, and need for continuous supervision. A transfer home from the SNF was arranged.

The PCAFC allowed the veteran’s caregiver and family members to provide in-home full-time caregiving, as an alternative to facility placement. The caregiver received a variety of support, including access to peer support, instruction on ways to assist in his toileting, hygiene, and transfers, and a caregiving stipend. In addition to offsetting lost wages, the stipend also helped offset the cost of care supplies which were not provided or were not readily available from the VA, which at the time included the patient’s preferred nutritional supplement and some supplies for personal care.

The veteran’s care needs continued to escalate. A fall at home resulted in a hip fracture, which was treated with surgical pinning. Postfracture physical therapy in a facility was considered, but ultimately was provided at home. The patient also experienced multiple UTIs and resulting delirium, with accompanying agitation and hallucinations. These episodes improved with IV antibiotics and hydration during short hospital stays. Ultimately, a computed tomography demonstrated overflow incontinence likely related to urologic damage from prior kidney stones and stent placement was recommended.

Visiting skilled nurses for the patient’s area were difficult to coordinate but were eventually arranged. The patient continued residing in his home with the support of his caregiver, the PCAFC, and the local VA medical center geriatric and transitional care services. The patient was also referred to the palliative care outpatient specialty clinic for discussion of goals of care and assistance with advance care planning as his illness progressed. Mental health and geriatric psychiatry consult teams were considered for this case but not utilized.

Discussion

Older adult Americans are at high risk of poor financial wellbeing, with nearly one quarter of Americans aged > 62 years experiencing financial insecurity.¹² Even in this case with health care provided by the VA, successful in-home care was challenging and required a dedicated live-in caregiver, care coordination resources, and financial support. As part of its mission of caring for veterans, the VA has instituted CSP, whose mission is to promote the health and well-being of family caregivers through education, support, and services.

PCAFC offers enhanced clinical support for caregivers of eligible veterans who are seriously injured. This includes resources, education, support, financial stipends, health insurance (if eligible), and beneficiary travel (if eligible) to primary caregivers of eligible veterans. PCAFC was originally reserved for veterans who had onset of service-related disability after September 11, 2001, with an associated personal care need. In this population, PCAFC demonstrated an increased usage of clinical resources, likely related to increased ease in accessing care.¹³

The cohort of post-9/11 veterans is very different from the cohort of veterans and their caregivers who may now qualify for the PCAFC after its October 2020 expansion. Veterans from the Vietnam, Korean, and World War II eras of conflict have rates of service-connected disability 2 to 3 times higher than those of post-9/11 era veterans and are at greater risk for dementia.⁹ Veterans aged ≥ 75 years who have service connection also report higher rates of difficulty with independent living and self-care compared with their younger peers.⁹ Since dementia and PTSD are common causes of service connection and disability it is likely that a significant proportion of older veterans will be eligible to apply for the newly expanded PCAFC.

To be eligible for PCAFC, a veteran must have a service-connected disability rating of ≥ 70% and must need in-person care services for ≥ 6 continuous months, based on either an inability to perform an ADL, or a need for supervision, protection, or instruction. PGCSS and PCAFC also may improve access to dementia-specific resources and care. These programs jointly improve access to care, clinical and community resources, and support, and serve to further support in-home care with consistent caregivers who have known the veterans for decades as an alternative to SNF care, as they did in this case. Although in-home care with appropriate support has not been found to be clinically superior, it has been found to be noninferior to SNF living for older adults.¹⁴ More familiar environments and caregivers such as those at home may also reduce the risk of long-term adverse outcomes such as delirium and falls, but there is still more research to be done to examine the ultimate clinical impact of aging in place for people with dementia. Most importantly, for many veterans and their family caregivers, living at home is preferable to SNF care, but may prove especially challenging in the context of advanced-stage dementia without CSP support.

It is not clear how CSP use or increased access to PCAFC will impact costs. However, the PCAFC monthly stipend is scaled to the median wage of a home health aide and to the location of the caregiver, which is considerably less than the cost of recurrent hospitalization or a year of facility-level care.¹⁵ The CSP may eventually be a successful long-term investment in cost savings. In order to ensure the process for PCAFC approval is uniform and prompt as the program expands, CSP has restructured, increasing the number of employees, improving the patient review process, and expanding staff training.¹⁶ The VA plans to continually re-assess CSP using the infrastructure of the Caregiver Record Management Application as it continues to expand.¹⁷

Conclusions

Dementia and PTSD commonly coexist and are a significant source of disability in the service-connected veteran population. This case brings attention to the recent expansion of PCAFC, which now has the potential to support eligible veterans from the World War II, Korean, and Vietnam-era conflicts, in whom these illnesses are more common. In this case, in-home care was preferred by the veteran and primary caregiver but would not have been possible without a complex intervention. There is still more research to be done on the best way to meet the needs of older adults with dementia, the impact of in-home care, and the system-wide implications of PCAFC, especially as the program grows. However, in-home care is preferable to SNF living for many veterans and caregivers, and CSP will continue to be an essential element of providing care for this population.

Acknowledgments

This material is the result of work supported with resources and the use of facilities at the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. The authors would also like to thank the members of the Veterans Affairs Central Office and National Caregiver Support Program Office, including Elyse Kaplan, Melinda Hogue, Beth Wolfsohn, Colleen Richardson, and Timothy Jobin, for their thorough review of the work and edits to ensure accurate program description.

Caregiving for a person with dementia in the community can be extremely difficult work. Much of this work falls on unpaid or informal caregivers. Sixty-three percent of older adults with dementia depend completely on unpaid caregivers, and an additional 26% receive some combination of paid and unpaid support, together comprising nearly 90% of the more than 3 million older Americans with dementia.¹ In-home care is preferable for these patients. For veterans, the Caregiver Support Program (CSP) is the only US Department of Veterans Affairs (VA) program that exclusively supports caregivers. Although the CSP is not a nursing home diversion or cost savings program, successfully enabling at-home living in lieu of facility living also has the potential to reduce overall cost of care, and most importantly, to enable veterans who desire it to age at home.^2,3

The CSP has 2 unique programs for caregivers of eligible veterans. The Program of General Caregiver Support Services (PGCSS) provides resources, education, and support to caregivers of all veterans enrolled in the Veterans Health Administration (VHA). The Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides education and training, access to health care insurance if eligible, mental health counseling, access to a monthly caregiver stipend, enhanced respite care, wellness contacts, and travel compensation for VA health care appointments (Table 1).^4,5

Patients undergo a rigorous assessment and highly specialized and individualized clinical decision-making process to confirm the service is appropriate for the patient. PCAFC was restructured and expanded on October 1, 2020.⁶ Currently, veterans who incurred or aggravated a serious injury (defined by a single or combined service-connection rating of ≥ 70%) in active military service before May 8, 1975, or after September 10, 2001, are eligible for PCAFC.⁶ Most notably, these changes opened eligibility in the PCAFC to caregivers of veterans from the Vietnam, Korean, and World War II eras of conflict and veterans with dependence in activities of daily living (ADL) due to a wider variety of illnesses, including dementia.⁶ The PCAFC is set to further expand to caregivers of otherwise eligible veterans of all eras of service on October 1, 2022, 2 years after the initial expansion, as laid out in the 2018 VA MISSION Act.⁶ Additional information on the history of the PGCSS and PCAFC and eligibility criteria for veterans and their family caregivers can be found in Tables 2 and 3.

Case Presentation

A male combat veteran presented to his primary care practitioner (PCP) with concerns of several years of progressive changes in gait, forgetfulness, and a gradual decline in the ability to live independently without assistance. At that time, his medical history was notable for PTSD (50% service connection), which had been diagnosed over a decade prior (but for which the veteran had refused medication or therapy on multiple occasions, stating he preferred to “breathe through” his intrusive symptom flare-ups), localized prostate cancer with a radical prostatectomy (100% service connection), multiple kidney stones with persistent left ureteral inflammation, and arteriosclerotic heart disease (10% service connection). A Saint Louis University Mental Status Exam (SLUMS) performed by the PCP was notable for a score of 9/30, in the dementia range. A computed tomography of the brain demonstrated scattered foci of hypoattenuation attributable to normal aging without any other pathology noted.

The veteran was referred to the Cognitive Care clinic, a local longitudinal multidisciplinary dementia care clinic, along with his spouse/caregiver. Cognitive testing was performed by a licensed clinical psychologist in the clinic and was notable for a Mini-Mental State Exam (MMSE) score of 18/30, also in the dementia range, and a more robust neuropsychiatric battery demonstrated borderline intact memory and language function but impairments in executive function and visuospatial skills. The patient’s clinical history included functional loss over time, with total dependence in instrumental activities of daily living (IADL), or tasks necessary to be fully independent or manage a household, including inability to manage finances, and some need for assistance in ADL, or personal care tasks such as dressing or grooming, including bathing. Physical examination was notable for bradykinesia, a shuffling gait, and rare episodes of speaking to someone who was not in the room, thought to be due to mild nondistressing hallucinations.

A diagnosis of LBD was made. At time of diagnosis, the patient met criteria for probable dementia with Lewy bodies, with 2 of 4 core clinical features (hallucinations and Parkinsonism), and multiple supportive features (gait disturbance, sensory disturbance, and altered mood).^10,11 The veteran continued to develop more supportive features for diagnosis of LBD over time, including evidence of autonomic instability.

The veteran and his caregiver were educated on his diagnosis, and longitudinal support was offered. The veteran was no longer driving, and due to the severity of his symptoms, the importance of driving cessation was reinforced by the care team. Over the course of the next year, his illness progressed, with more frequent behaviors and psychological symptoms of dementia (BPSD). He began to exhibit nighttime wandering throughout the house and became more anxious and restless during the day. He lost the ability to make his own health care decisions, and his spouse became his activated health care power of attorney (HCPOA). His BPSD became more disruptive to daily life and was accompanied by a change in the character of his hallucinations, with prior nondistressing visions of other people being replaced with visions of war, burning bodies, and violence, much of it related to combat experiences in Vietnam. The BPSD began to include hiding behind furniture, running out of the house, and shouting and crying in response to hallucinations. At times, his BPSD became violent, lashing out in fear against his hallucinations and caregiver.

The veteran’s change in BPSD was concerning for a new baseline, rather than being clearly related to an underlying unmet physical need, such as pain, hunger, sleep, or discomfort. Multiple hospital admissions during that year involved IV hydration and treatment for urinary tract infections (UTI) for several days of inpatient stay at a time, but these behaviors persisted despite infection treatment and hydration. The patient’s changes in BPSD were thought to be secondary to uncovered and intensified PTSD in the setting of progressive dementia. Due to the clear danger the patient posed to himself and others, potential treatment options for these PTSD-related hallucinations were discussed with his caregiver. The caregiver shared that the patient’s BPSD and hallucinations were so distressing that “he would never want to live like this,” and that things had progressed to the point that “he has no quality of life.”

Oral aripiprazole 2 mg twice daily was prescribed after the risks of infection, cardiac complications, and exacerbation of movement disorder symptoms, such as increased stiffness and falls, were discussed with the caregiver. The caregiver was employed and relied on continued employment for income, but the patient could not be safely left alone. As the patient and his caregiver had reached a crisis point and living at home no longer appeared to be safe, the patient was referred to a VA-contracted skilled nursing facility (SNF) for long-term care. The patient’s caregiver was also referred to CSP for support during this transition. Due to the patient’s level of service connection and personal needs, as well as the patient and caregiver’s preference for the veteran to remain in his home, they were evaluated for the PCAFC for enhanced support to enable home as an alternative to facility living, should the patient respond to the antipsychotic therapy sufficiently, which was evaluated on a regular basis.

After several months, the patient’s BPSD had improved significantly, and he was no longer experiencing distressing hallucinations. However, his mobility also declined, and he became fully dependent in most ADL, including transfers, hygiene, and toileting. Due to the COVID-19 pandemic, visitation was limited, which was difficult for both the patient and his caregiver. The veteran and caregiver were approved for PCAFC due to the veteran’s combination of service-connected illnesses > 70%, dependence for most ADLs, and need for continuous supervision. A transfer home from the SNF was arranged.

The PCAFC allowed the veteran’s caregiver and family members to provide in-home full-time caregiving, as an alternative to facility placement. The caregiver received a variety of support, including access to peer support, instruction on ways to assist in his toileting, hygiene, and transfers, and a caregiving stipend. In addition to offsetting lost wages, the stipend also helped offset the cost of care supplies which were not provided or were not readily available from the VA, which at the time included the patient’s preferred nutritional supplement and some supplies for personal care.

The veteran’s care needs continued to escalate. A fall at home resulted in a hip fracture, which was treated with surgical pinning. Postfracture physical therapy in a facility was considered, but ultimately was provided at home. The patient also experienced multiple UTIs and resulting delirium, with accompanying agitation and hallucinations. These episodes improved with IV antibiotics and hydration during short hospital stays. Ultimately, a computed tomography demonstrated overflow incontinence likely related to urologic damage from prior kidney stones and stent placement was recommended.

Visiting skilled nurses for the patient’s area were difficult to coordinate but were eventually arranged. The patient continued residing in his home with the support of his caregiver, the PCAFC, and the local VA medical center geriatric and transitional care services. The patient was also referred to the palliative care outpatient specialty clinic for discussion of goals of care and assistance with advance care planning as his illness progressed. Mental health and geriatric psychiatry consult teams were considered for this case but not utilized.

Discussion

Older adult Americans are at high risk of poor financial wellbeing, with nearly one quarter of Americans aged > 62 years experiencing financial insecurity.¹² Even in this case with health care provided by the VA, successful in-home care was challenging and required a dedicated live-in caregiver, care coordination resources, and financial support. As part of its mission of caring for veterans, the VA has instituted CSP, whose mission is to promote the health and well-being of family caregivers through education, support, and services.

PCAFC offers enhanced clinical support for caregivers of eligible veterans who are seriously injured. This includes resources, education, support, financial stipends, health insurance (if eligible), and beneficiary travel (if eligible) to primary caregivers of eligible veterans. PCAFC was originally reserved for veterans who had onset of service-related disability after September 11, 2001, with an associated personal care need. In this population, PCAFC demonstrated an increased usage of clinical resources, likely related to increased ease in accessing care.¹³

The cohort of post-9/11 veterans is very different from the cohort of veterans and their caregivers who may now qualify for the PCAFC after its October 2020 expansion. Veterans from the Vietnam, Korean, and World War II eras of conflict have rates of service-connected disability 2 to 3 times higher than those of post-9/11 era veterans and are at greater risk for dementia.⁹ Veterans aged ≥ 75 years who have service connection also report higher rates of difficulty with independent living and self-care compared with their younger peers.⁹ Since dementia and PTSD are common causes of service connection and disability it is likely that a significant proportion of older veterans will be eligible to apply for the newly expanded PCAFC.

To be eligible for PCAFC, a veteran must have a service-connected disability rating of ≥ 70% and must need in-person care services for ≥ 6 continuous months, based on either an inability to perform an ADL, or a need for supervision, protection, or instruction. PGCSS and PCAFC also may improve access to dementia-specific resources and care. These programs jointly improve access to care, clinical and community resources, and support, and serve to further support in-home care with consistent caregivers who have known the veterans for decades as an alternative to SNF care, as they did in this case. Although in-home care with appropriate support has not been found to be clinically superior, it has been found to be noninferior to SNF living for older adults.¹⁴ More familiar environments and caregivers such as those at home may also reduce the risk of long-term adverse outcomes such as delirium and falls, but there is still more research to be done to examine the ultimate clinical impact of aging in place for people with dementia. Most importantly, for many veterans and their family caregivers, living at home is preferable to SNF care, but may prove especially challenging in the context of advanced-stage dementia without CSP support.

It is not clear how CSP use or increased access to PCAFC will impact costs. However, the PCAFC monthly stipend is scaled to the median wage of a home health aide and to the location of the caregiver, which is considerably less than the cost of recurrent hospitalization or a year of facility-level care.¹⁵ The CSP may eventually be a successful long-term investment in cost savings. In order to ensure the process for PCAFC approval is uniform and prompt as the program expands, CSP has restructured, increasing the number of employees, improving the patient review process, and expanding staff training.¹⁶ The VA plans to continually re-assess CSP using the infrastructure of the Caregiver Record Management Application as it continues to expand.¹⁷

Conclusions

Dementia and PTSD commonly coexist and are a significant source of disability in the service-connected veteran population. This case brings attention to the recent expansion of PCAFC, which now has the potential to support eligible veterans from the World War II, Korean, and Vietnam-era conflicts, in whom these illnesses are more common. In this case, in-home care was preferred by the veteran and primary caregiver but would not have been possible without a complex intervention. There is still more research to be done on the best way to meet the needs of older adults with dementia, the impact of in-home care, and the system-wide implications of PCAFC, especially as the program grows. However, in-home care is preferable to SNF living for many veterans and caregivers, and CSP will continue to be an essential element of providing care for this population.

Acknowledgments

This material is the result of work supported with resources and the use of facilities at the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. The authors would also like to thank the members of the Veterans Affairs Central Office and National Caregiver Support Program Office, including Elyse Kaplan, Melinda Hogue, Beth Wolfsohn, Colleen Richardson, and Timothy Jobin, for their thorough review of the work and edits to ensure accurate program description.

Gadolinium (Gd)-based contrast agents are frequently used in health care for enhancing magnetic resonance image (MRI) signals at low concentrations. Contrary to popular opinion, this widely used heavy metal is not biologically inert. Once notable for its safety profile, there is mounting evidence for Gd deposition in various organ systems of the body, even in those with normal renal function. A large knowledge gap remains concerning the potential harms of Gd deposition and the factors determining its elimination from the body. However, the findings of deposited Gd throughout various organs and their intracellular compartments even years after the initial exposure have been established. Here, we describe a case of a Vietnam-era veteran whose presentation, clinical, and laboratory findings were consistent within the spectrum of Gd deposition disease. 

Case Presentation

A Vietnam-era veteran aged > 70 years presented for evaluation of Gd-based contrast agent–induced chronic multisymptomatic illness His medical history was significant for chronic low back pain, chronic hypertension, type 2 diabetes mellitus, and hypogonadism. Surgical history was notable for back surgery (24 years prior), laminectomy (2 years prior), shoulder replacement (2 years prior), and an epidural complicated by a hematoma (1 year prior). His presenting concerns included a painful and pruritic rash that worsened with showering, pain originating at the right Achilles tendon with migration to the knee, and shoulder pain. His symptoms started shortly after receiving multiple exposures to Gd-based contrast agents to enhance MRIs during his clinical care (Omniscan 20 mL, Omniscan 20 mL, and Gadovist 10 mL, administered 578, 565, and 496 days prior to the clinic visit, respectively). New onset headaches coincided with the timeline of symptom onset, in addition to hoarseness and liberation of an “oily substance” from the skin. More than one year prior to this clinic visit, he was considered for having polymyalgia rheumatica given the ambiguity of symptoms. Functional status remained impaired despite treatment with prednisone and methotrexate.

The patient’s military service was in the mid-1960s. He was deployed to Japan and had no knowledge of an Agent Orange exposure. His tobacco history was distant, and he reported no tattoos, prior transfusions, or occupational metal exposure (he was never stationed at Camp Lejeune or other bases with potential toxicants in the drinking water). Family history was significant for lung cancer in his mother (smoker) and his father died aged > 90 years. One sister had fibromyalgia. The patient’s children were healthy.

Clinical Findings

The patient was afebrile, normotensive (146/88 mmHg), and normocardic. His weight was 100 kg. He was well nourished and in no acute distress. The thought process was attentive, and his affect pleasant. Ocular examination was notable for arcus senilus. The fundoscopic examination was limited on the left, but there was no neovascularization on the right. Jugular venous pulsation was normal at 8 cm. Right ventricular impulse was slightly hyperdynamic, the rhythm was regular, and there was no abnormal splitting of S2. A soft-grade I/VI crescendo/decrescendo murmur was auscultated along the apex. Radial pulses were 2/2. He was not in respiratory distress, with equally resonant fields bilaterally. Lung sounds were clear bilaterally. A papular, erythematous rash was present in a general distribution over the chest, with few telangiectasias and some varicosity along his left arm. The skin had normal elasticity, although the skin of the hands and legs was papyraceous.

Gd levels were measured in the blood and urine (Table 1). Gd was detectable in the skin (0.2 µg/g) nearly 400 days after the last exposure. Gd was still detectable in the patient’s blood and urine (0.2 ng/mL and 0.5 µg/24 h, respectively) more than 3 years after his last exposure.

Discussion

In the United States, there are 40.44 MRI units per million people and 40 million MRIs are conducted annually. From 30 to 50% of these are enhanced with Gd-based contrast agents. In the past 30 years, there have been > 450 million contrast-enhanced MRI procedures.¹

Gd is a rare earth metal. Among commercially available elements Gd has exceptional properties for enhancing MRI signals at low concentrations.¹ The nonphysiologic metal is detoxified by chelation with proprietary multidentate formulations that enhance (primarily renal) elimination while retaining the paramagnetic and chemical properties for imaging. Gd exposure was found to be associated to iatrogenic nephrogenic systemic fibrosis in 2006 and later confirmed via multiple systematic reviews.² Gd is retained in every vital organ after exposure.³ Gd-based contrast agents stimulate bone marrow–derived fibrocytes in mediating fibrosis, and bone marrow develop a memory of prior contrast exposure (Figure 1).^4-6 Systemic fibrosis is mediated by the monocyte chemoattractant protein 1/C-C chemokine receptor 2.^6,7 Even in the setting of normal renal function, Gd-based contrast induces the formation of Gd-rich nanoparticles in the skin and kidney.^7,8 Far from being inert, Gd-based contrast agents induce systemic metabolic changes such as hypertriglyceridemia, elevations in low-density lipoprotein cholesterol, insulin resistance, and the Warburg effect (glycolytic/energy switching) in the renal cortex concomitant with profound mitochondrial abnormalities.⁸

A, B, and C are the proportions (adding to 100%) that represent each of the compartments: quickly, intermediately, and slowly equilibrated spaces. The rate constants for renal elimination from the plasma (K_P0,) flux from the fast space to plasma (K_FP) and from the slowly equilibrated space to plasma (K_SP) are components of the total Gd elimination from these compartments, respectively (Figure 3). It is improbable that Gd is liberated from the multidentate formulations that constitute MRI contrast agents given the relatively high affinities for the toxic lanthanide metal, the low volume of distribution, and the rapid—essentially entirely renal—elimination rates (Figure 4). Nonetheless, Gd is retained long-term in subjects with normal renal function, in symptomatic patients, permanently in the brains of patients, and in every organ we have tested with our animal models.^3,7,8,10-12 Patients with normal renal function continue to report symptoms attributed to Gd-based contrast agents concomitant with retarded elimination.

Numerous patients with normal renal function developed similar or novel symptoms that have been attributed to Gd concomitant with detectable urinary Gd years after exposure.¹¹ Gd-based contrast agents are increasingly associated with cutaneous abnormalities even outside of nephrogenic systemic fibrosis. Gd-associated plaques develop in patients without kidney disease—these range from asymptomatic, pruritic, to burning.¹³ Histologic specimens reveal CD68 and factor XIIIa–positive spindle-shaped myeloid cells (the same mediators of iatrogenic systemic fibrosis) or CD34-positive cells. CD68 and factor XIIIa are distinctive for histologic specimens from patients with systemic fibrosis, and these markers have been detected in our preclinical models that demonstrated that bone marrow–derived cells are involved in mediating fibrosis.^3,4,14-19 Similarly, CD34-positive cells have been historically associated with systemic fibrosis lesions.^15,16,18-23 Plump osteocyte-appearing cells have also been noted (note that extraosseous metaplasia makes the histologic diagnosis of systemic fibrosis).¹⁴ Nephrogenic systemic fibrosis is an iatrogenic disease that can manifest years after exposure to Gd.⁵ Gd induces the recruitment of bone marrow–derived cells to the affected sites.⁴

The VA Health Service Research and Development Evidence Synthesis Program reviewed the safety of Gd-based contrast agents in patients with impaired kidney function.^24,25 The group found only a single study of Gd and veterans. “Awareness and concern are growing about the long-term deposition of gadolinium in [the] brain and other tissues among patients with normal kidney function,” according to Lunyera and colleagues.²⁵ The largest knowledge gap was that a comprehensive review “of all potential harms associated with gadolinium exposure” was not addressed. Furthermore, the group advised “caution in the use of [Gd-based contrast agents] in patients with severely impaired kidney function and acute kidney injury remains prudent, because the exact clinical factors contributing to [nephrogenic systemic fibrosis] risk in these subpopulations are still unknown.”²⁵

Gd-based contrast agents—contrary to a widely held misconception—are not biologically inert.¹ Gd-based contrast agents have a long history of association with acute renal injury. We have demonstrated that systemic treatment with MRI contrast agents leads to vacuolization of the proximal tubule and tubular injury.^7,8 Kidney injury may be mediated by the generation of reactive oxygen species from NADPH oxidase 4 (Nox4).²⁶

Gd retention, Gd-induced multisymptomatic illnesses, Gd-associated plaques, Gd-induced neurotoxicity, and nephrogenic systemic fibrosis are part of a continuum (with Gd as the common thread)—a theme of the September 8, 2017, US Food and Drug Administration (FDA) Medical Imaging Drugs Advisory Committee meeting.²⁷ Patients, patient advocacy groups, and regulating agencies are concerned about long-term retention of a nonphysiologic rare earth element such as Gd.^28-30 A patient advocacy group, The Lighthouse Project, collected information from patients linking the last date of Gd-based contrast agent exposure and urinary Gd.¹¹ Data from their report suggest that the rate constants (valuable for the elimination equation above) are obtainable from 24-hour urine collections. Conceptually, Gd-induced diseases may represent a continuum that results from the retention of a nonphysiologic, toxic heavy rare earth metal.

As a heavy metal, Gd is not a natural physiologic trace element. Similar to numerous nonphysiologic metals, Gd is toxic. Inhaled Gd oxide (Gd₂O₃) dust leads to a number of time-dependent pathologies. Animal lung studies demonstrate reduced elasticity, enlarged cells, thickened lung walls, and recruitment of immune cells.³¹ Symptoms of acute IV Gd toxicity include decreased respiration, lethargy, abdominal cramps, and diarrhea.³² Pharmacologically, Gd concentrates in the liver and kidney and accumulates in the bone.³² Animals demonstrate intestinal depression and low blood pressure in response to Gd and, with higher doses, cardiovascular collapse.³² IV Gd chloride leads to metal deposition in the small blood vessels diffusely throughout the body, particularly in the lung and kidney and the metal is absorbed by the scavenging white blood cells.³³ Gd chloride induces severe damage to the liver, spleen, and the digestive tract.³³ Furthermore, this form of the toxicant metal markedly impacted functions associated with bleeding and clotting, ie, decreased platelet numbers and an increase in the laboratory-measured coagulation parameters.³³ Semelka and colleagues have characterized chronic symptoms attributed to Gd-based contrast agents (not limited to chronic pain, headache, bone pain, skin thickening, and clouded mentation).^34,35 Because Gd-induced conditions are underrecognized and ill-defined, disinherited patients often resort to untested (and potentially dangerous) chelation therapies.³⁶

This patient presented with numerous symptoms that arose after Gd exposure. It is well established that Gd-based contrast agents (of any class) are retained in multiple organs (including the brain), for months to years. Gd-based contrast agents enter the cerebrospinal fluid within minutes of IV administration.³⁷ Gd was found in the cerebrospinal fluid 9 months after administration in a case presented to the FDA Medical Imaging Drugs Advisory Committee.³⁸ We know from intentional and accidental intrathecal administrations that Gd-based contrast agents are neurotoxic.³⁹ Runge and colleagues demonstrated that Gd-based contrast agents exert mitochondrial toxicity in cultured neurons in vitro.⁴⁰ McDonald and his team found Gd-rich nanoparticles within the brain neurons (cytoplasm and nuclei) from patients exposed to MRI contrast in the normal course of care.⁴¹ These nanoparticles are similar to what we have found in rodent models of Gd-induced disease.^7,8,42

Patient Perspective

“Seems like it’s one thing after another. My family doctor said that once I had the gadolinium exposures, I have had problems ever since that I don’t recover from.” This includes chronic numbness from the rectum to the bilateral lower extremities and an indolent worsening kidney function; “I have already developed stage 3B chronic kidney disease.” Similar to many suffering with gadolinium retention, the patient was concerned about the long-term consequences. Gadolinium “is a toxic metal that is going through my body for 4 years. That has to be a problem. How come we don’t have that answer?” Clinician ignorance of Gd-induced complications and long-term retention is frustrating. “Not one of my doctors has taken gadolinium retention seriously. Where else are patients supposed to go?”

Conclusions

Health care professionals should be considering subclinical manifestations of nephrogenic systemic fibrosis or open to considering that intracellular neuronal retention of Gd may correlate with symptoms arising after MRI contrast exposures. The science concerning the mechanisms of how Gd exerts its pathologic effects is lagging behind the commercialization of enhancing Gd elimination (ie, chelation therapies) and other untested remedies. Practitioners need to acknowledge the unknown potential consequences of Gd and listen to patients who suspect chronic adverse effects.

Gadolinium (Gd)-based contrast agents are frequently used in health care for enhancing magnetic resonance image (MRI) signals at low concentrations. Contrary to popular opinion, this widely used heavy metal is not biologically inert. Once notable for its safety profile, there is mounting evidence for Gd deposition in various organ systems of the body, even in those with normal renal function. A large knowledge gap remains concerning the potential harms of Gd deposition and the factors determining its elimination from the body. However, the findings of deposited Gd throughout various organs and their intracellular compartments even years after the initial exposure have been established. Here, we describe a case of a Vietnam-era veteran whose presentation, clinical, and laboratory findings were consistent within the spectrum of Gd deposition disease. 

Case Presentation

A Vietnam-era veteran aged > 70 years presented for evaluation of Gd-based contrast agent–induced chronic multisymptomatic illness His medical history was significant for chronic low back pain, chronic hypertension, type 2 diabetes mellitus, and hypogonadism. Surgical history was notable for back surgery (24 years prior), laminectomy (2 years prior), shoulder replacement (2 years prior), and an epidural complicated by a hematoma (1 year prior). His presenting concerns included a painful and pruritic rash that worsened with showering, pain originating at the right Achilles tendon with migration to the knee, and shoulder pain. His symptoms started shortly after receiving multiple exposures to Gd-based contrast agents to enhance MRIs during his clinical care (Omniscan 20 mL, Omniscan 20 mL, and Gadovist 10 mL, administered 578, 565, and 496 days prior to the clinic visit, respectively). New onset headaches coincided with the timeline of symptom onset, in addition to hoarseness and liberation of an “oily substance” from the skin. More than one year prior to this clinic visit, he was considered for having polymyalgia rheumatica given the ambiguity of symptoms. Functional status remained impaired despite treatment with prednisone and methotrexate.

The patient’s military service was in the mid-1960s. He was deployed to Japan and had no knowledge of an Agent Orange exposure. His tobacco history was distant, and he reported no tattoos, prior transfusions, or occupational metal exposure (he was never stationed at Camp Lejeune or other bases with potential toxicants in the drinking water). Family history was significant for lung cancer in his mother (smoker) and his father died aged > 90 years. One sister had fibromyalgia. The patient’s children were healthy.

Clinical Findings

The patient was afebrile, normotensive (146/88 mmHg), and normocardic. His weight was 100 kg. He was well nourished and in no acute distress. The thought process was attentive, and his affect pleasant. Ocular examination was notable for arcus senilus. The fundoscopic examination was limited on the left, but there was no neovascularization on the right. Jugular venous pulsation was normal at 8 cm. Right ventricular impulse was slightly hyperdynamic, the rhythm was regular, and there was no abnormal splitting of S2. A soft-grade I/VI crescendo/decrescendo murmur was auscultated along the apex. Radial pulses were 2/2. He was not in respiratory distress, with equally resonant fields bilaterally. Lung sounds were clear bilaterally. A papular, erythematous rash was present in a general distribution over the chest, with few telangiectasias and some varicosity along his left arm. The skin had normal elasticity, although the skin of the hands and legs was papyraceous.

Gd levels were measured in the blood and urine (Table 1). Gd was detectable in the skin (0.2 µg/g) nearly 400 days after the last exposure. Gd was still detectable in the patient’s blood and urine (0.2 ng/mL and 0.5 µg/24 h, respectively) more than 3 years after his last exposure.

Discussion

In the United States, there are 40.44 MRI units per million people and 40 million MRIs are conducted annually. From 30 to 50% of these are enhanced with Gd-based contrast agents. In the past 30 years, there have been > 450 million contrast-enhanced MRI procedures.¹

Gd is a rare earth metal. Among commercially available elements Gd has exceptional properties for enhancing MRI signals at low concentrations.¹ The nonphysiologic metal is detoxified by chelation with proprietary multidentate formulations that enhance (primarily renal) elimination while retaining the paramagnetic and chemical properties for imaging. Gd exposure was found to be associated to iatrogenic nephrogenic systemic fibrosis in 2006 and later confirmed via multiple systematic reviews.² Gd is retained in every vital organ after exposure.³ Gd-based contrast agents stimulate bone marrow–derived fibrocytes in mediating fibrosis, and bone marrow develop a memory of prior contrast exposure (Figure 1).^4-6 Systemic fibrosis is mediated by the monocyte chemoattractant protein 1/C-C chemokine receptor 2.^6,7 Even in the setting of normal renal function, Gd-based contrast induces the formation of Gd-rich nanoparticles in the skin and kidney.^7,8 Far from being inert, Gd-based contrast agents induce systemic metabolic changes such as hypertriglyceridemia, elevations in low-density lipoprotein cholesterol, insulin resistance, and the Warburg effect (glycolytic/energy switching) in the renal cortex concomitant with profound mitochondrial abnormalities.⁸

A, B, and C are the proportions (adding to 100%) that represent each of the compartments: quickly, intermediately, and slowly equilibrated spaces. The rate constants for renal elimination from the plasma (K_P0,) flux from the fast space to plasma (K_FP) and from the slowly equilibrated space to plasma (K_SP) are components of the total Gd elimination from these compartments, respectively (Figure 3). It is improbable that Gd is liberated from the multidentate formulations that constitute MRI contrast agents given the relatively high affinities for the toxic lanthanide metal, the low volume of distribution, and the rapid—essentially entirely renal—elimination rates (Figure 4). Nonetheless, Gd is retained long-term in subjects with normal renal function, in symptomatic patients, permanently in the brains of patients, and in every organ we have tested with our animal models.^3,7,8,10-12 Patients with normal renal function continue to report symptoms attributed to Gd-based contrast agents concomitant with retarded elimination.

Numerous patients with normal renal function developed similar or novel symptoms that have been attributed to Gd concomitant with detectable urinary Gd years after exposure.¹¹ Gd-based contrast agents are increasingly associated with cutaneous abnormalities even outside of nephrogenic systemic fibrosis. Gd-associated plaques develop in patients without kidney disease—these range from asymptomatic, pruritic, to burning.¹³ Histologic specimens reveal CD68 and factor XIIIa–positive spindle-shaped myeloid cells (the same mediators of iatrogenic systemic fibrosis) or CD34-positive cells. CD68 and factor XIIIa are distinctive for histologic specimens from patients with systemic fibrosis, and these markers have been detected in our preclinical models that demonstrated that bone marrow–derived cells are involved in mediating fibrosis.^3,4,14-19 Similarly, CD34-positive cells have been historically associated with systemic fibrosis lesions.^15,16,18-23 Plump osteocyte-appearing cells have also been noted (note that extraosseous metaplasia makes the histologic diagnosis of systemic fibrosis).¹⁴ Nephrogenic systemic fibrosis is an iatrogenic disease that can manifest years after exposure to Gd.⁵ Gd induces the recruitment of bone marrow–derived cells to the affected sites.⁴

The VA Health Service Research and Development Evidence Synthesis Program reviewed the safety of Gd-based contrast agents in patients with impaired kidney function.^24,25 The group found only a single study of Gd and veterans. “Awareness and concern are growing about the long-term deposition of gadolinium in [the] brain and other tissues among patients with normal kidney function,” according to Lunyera and colleagues.²⁵ The largest knowledge gap was that a comprehensive review “of all potential harms associated with gadolinium exposure” was not addressed. Furthermore, the group advised “caution in the use of [Gd-based contrast agents] in patients with severely impaired kidney function and acute kidney injury remains prudent, because the exact clinical factors contributing to [nephrogenic systemic fibrosis] risk in these subpopulations are still unknown.”²⁵

Gd-based contrast agents—contrary to a widely held misconception—are not biologically inert.¹ Gd-based contrast agents have a long history of association with acute renal injury. We have demonstrated that systemic treatment with MRI contrast agents leads to vacuolization of the proximal tubule and tubular injury.^7,8 Kidney injury may be mediated by the generation of reactive oxygen species from NADPH oxidase 4 (Nox4).²⁶

Gd retention, Gd-induced multisymptomatic illnesses, Gd-associated plaques, Gd-induced neurotoxicity, and nephrogenic systemic fibrosis are part of a continuum (with Gd as the common thread)—a theme of the September 8, 2017, US Food and Drug Administration (FDA) Medical Imaging Drugs Advisory Committee meeting.²⁷ Patients, patient advocacy groups, and regulating agencies are concerned about long-term retention of a nonphysiologic rare earth element such as Gd.^28-30 A patient advocacy group, The Lighthouse Project, collected information from patients linking the last date of Gd-based contrast agent exposure and urinary Gd.¹¹ Data from their report suggest that the rate constants (valuable for the elimination equation above) are obtainable from 24-hour urine collections. Conceptually, Gd-induced diseases may represent a continuum that results from the retention of a nonphysiologic, toxic heavy rare earth metal.

As a heavy metal, Gd is not a natural physiologic trace element. Similar to numerous nonphysiologic metals, Gd is toxic. Inhaled Gd oxide (Gd₂O₃) dust leads to a number of time-dependent pathologies. Animal lung studies demonstrate reduced elasticity, enlarged cells, thickened lung walls, and recruitment of immune cells.³¹ Symptoms of acute IV Gd toxicity include decreased respiration, lethargy, abdominal cramps, and diarrhea.³² Pharmacologically, Gd concentrates in the liver and kidney and accumulates in the bone.³² Animals demonstrate intestinal depression and low blood pressure in response to Gd and, with higher doses, cardiovascular collapse.³² IV Gd chloride leads to metal deposition in the small blood vessels diffusely throughout the body, particularly in the lung and kidney and the metal is absorbed by the scavenging white blood cells.³³ Gd chloride induces severe damage to the liver, spleen, and the digestive tract.³³ Furthermore, this form of the toxicant metal markedly impacted functions associated with bleeding and clotting, ie, decreased platelet numbers and an increase in the laboratory-measured coagulation parameters.³³ Semelka and colleagues have characterized chronic symptoms attributed to Gd-based contrast agents (not limited to chronic pain, headache, bone pain, skin thickening, and clouded mentation).^34,35 Because Gd-induced conditions are underrecognized and ill-defined, disinherited patients often resort to untested (and potentially dangerous) chelation therapies.³⁶

This patient presented with numerous symptoms that arose after Gd exposure. It is well established that Gd-based contrast agents (of any class) are retained in multiple organs (including the brain), for months to years. Gd-based contrast agents enter the cerebrospinal fluid within minutes of IV administration.³⁷ Gd was found in the cerebrospinal fluid 9 months after administration in a case presented to the FDA Medical Imaging Drugs Advisory Committee.³⁸ We know from intentional and accidental intrathecal administrations that Gd-based contrast agents are neurotoxic.³⁹ Runge and colleagues demonstrated that Gd-based contrast agents exert mitochondrial toxicity in cultured neurons in vitro.⁴⁰ McDonald and his team found Gd-rich nanoparticles within the brain neurons (cytoplasm and nuclei) from patients exposed to MRI contrast in the normal course of care.⁴¹ These nanoparticles are similar to what we have found in rodent models of Gd-induced disease.^7,8,42

Patient Perspective

“Seems like it’s one thing after another. My family doctor said that once I had the gadolinium exposures, I have had problems ever since that I don’t recover from.” This includes chronic numbness from the rectum to the bilateral lower extremities and an indolent worsening kidney function; “I have already developed stage 3B chronic kidney disease.” Similar to many suffering with gadolinium retention, the patient was concerned about the long-term consequences. Gadolinium “is a toxic metal that is going through my body for 4 years. That has to be a problem. How come we don’t have that answer?” Clinician ignorance of Gd-induced complications and long-term retention is frustrating. “Not one of my doctors has taken gadolinium retention seriously. Where else are patients supposed to go?”

Conclusions

Health care professionals should be considering subclinical manifestations of nephrogenic systemic fibrosis or open to considering that intracellular neuronal retention of Gd may correlate with symptoms arising after MRI contrast exposures. The science concerning the mechanisms of how Gd exerts its pathologic effects is lagging behind the commercialization of enhancing Gd elimination (ie, chelation therapies) and other untested remedies. Practitioners need to acknowledge the unknown potential consequences of Gd and listen to patients who suspect chronic adverse effects.

Gadolinium (Gd)-based contrast agents are frequently used in health care for enhancing magnetic resonance image (MRI) signals at low concentrations. Contrary to popular opinion, this widely used heavy metal is not biologically inert. Once notable for its safety profile, there is mounting evidence for Gd deposition in various organ systems of the body, even in those with normal renal function. A large knowledge gap remains concerning the potential harms of Gd deposition and the factors determining its elimination from the body. However, the findings of deposited Gd throughout various organs and their intracellular compartments even years after the initial exposure have been established. Here, we describe a case of a Vietnam-era veteran whose presentation, clinical, and laboratory findings were consistent within the spectrum of Gd deposition disease. 

Case Presentation

A Vietnam-era veteran aged > 70 years presented for evaluation of Gd-based contrast agent–induced chronic multisymptomatic illness His medical history was significant for chronic low back pain, chronic hypertension, type 2 diabetes mellitus, and hypogonadism. Surgical history was notable for back surgery (24 years prior), laminectomy (2 years prior), shoulder replacement (2 years prior), and an epidural complicated by a hematoma (1 year prior). His presenting concerns included a painful and pruritic rash that worsened with showering, pain originating at the right Achilles tendon with migration to the knee, and shoulder pain. His symptoms started shortly after receiving multiple exposures to Gd-based contrast agents to enhance MRIs during his clinical care (Omniscan 20 mL, Omniscan 20 mL, and Gadovist 10 mL, administered 578, 565, and 496 days prior to the clinic visit, respectively). New onset headaches coincided with the timeline of symptom onset, in addition to hoarseness and liberation of an “oily substance” from the skin. More than one year prior to this clinic visit, he was considered for having polymyalgia rheumatica given the ambiguity of symptoms. Functional status remained impaired despite treatment with prednisone and methotrexate.

The patient’s military service was in the mid-1960s. He was deployed to Japan and had no knowledge of an Agent Orange exposure. His tobacco history was distant, and he reported no tattoos, prior transfusions, or occupational metal exposure (he was never stationed at Camp Lejeune or other bases with potential toxicants in the drinking water). Family history was significant for lung cancer in his mother (smoker) and his father died aged > 90 years. One sister had fibromyalgia. The patient’s children were healthy.

Clinical Findings

The patient was afebrile, normotensive (146/88 mmHg), and normocardic. His weight was 100 kg. He was well nourished and in no acute distress. The thought process was attentive, and his affect pleasant. Ocular examination was notable for arcus senilus. The fundoscopic examination was limited on the left, but there was no neovascularization on the right. Jugular venous pulsation was normal at 8 cm. Right ventricular impulse was slightly hyperdynamic, the rhythm was regular, and there was no abnormal splitting of S2. A soft-grade I/VI crescendo/decrescendo murmur was auscultated along the apex. Radial pulses were 2/2. He was not in respiratory distress, with equally resonant fields bilaterally. Lung sounds were clear bilaterally. A papular, erythematous rash was present in a general distribution over the chest, with few telangiectasias and some varicosity along his left arm. The skin had normal elasticity, although the skin of the hands and legs was papyraceous.

Gd levels were measured in the blood and urine (Table 1). Gd was detectable in the skin (0.2 µg/g) nearly 400 days after the last exposure. Gd was still detectable in the patient’s blood and urine (0.2 ng/mL and 0.5 µg/24 h, respectively) more than 3 years after his last exposure.

Discussion

In the United States, there are 40.44 MRI units per million people and 40 million MRIs are conducted annually. From 30 to 50% of these are enhanced with Gd-based contrast agents. In the past 30 years, there have been > 450 million contrast-enhanced MRI procedures.¹

Gd is a rare earth metal. Among commercially available elements Gd has exceptional properties for enhancing MRI signals at low concentrations.¹ The nonphysiologic metal is detoxified by chelation with proprietary multidentate formulations that enhance (primarily renal) elimination while retaining the paramagnetic and chemical properties for imaging. Gd exposure was found to be associated to iatrogenic nephrogenic systemic fibrosis in 2006 and later confirmed via multiple systematic reviews.² Gd is retained in every vital organ after exposure.³ Gd-based contrast agents stimulate bone marrow–derived fibrocytes in mediating fibrosis, and bone marrow develop a memory of prior contrast exposure (Figure 1).^4-6 Systemic fibrosis is mediated by the monocyte chemoattractant protein 1/C-C chemokine receptor 2.^6,7 Even in the setting of normal renal function, Gd-based contrast induces the formation of Gd-rich nanoparticles in the skin and kidney.^7,8 Far from being inert, Gd-based contrast agents induce systemic metabolic changes such as hypertriglyceridemia, elevations in low-density lipoprotein cholesterol, insulin resistance, and the Warburg effect (glycolytic/energy switching) in the renal cortex concomitant with profound mitochondrial abnormalities.⁸

A, B, and C are the proportions (adding to 100%) that represent each of the compartments: quickly, intermediately, and slowly equilibrated spaces. The rate constants for renal elimination from the plasma (K_P0,) flux from the fast space to plasma (K_FP) and from the slowly equilibrated space to plasma (K_SP) are components of the total Gd elimination from these compartments, respectively (Figure 3). It is improbable that Gd is liberated from the multidentate formulations that constitute MRI contrast agents given the relatively high affinities for the toxic lanthanide metal, the low volume of distribution, and the rapid—essentially entirely renal—elimination rates (Figure 4). Nonetheless, Gd is retained long-term in subjects with normal renal function, in symptomatic patients, permanently in the brains of patients, and in every organ we have tested with our animal models.^3,7,8,10-12 Patients with normal renal function continue to report symptoms attributed to Gd-based contrast agents concomitant with retarded elimination.

Numerous patients with normal renal function developed similar or novel symptoms that have been attributed to Gd concomitant with detectable urinary Gd years after exposure.¹¹ Gd-based contrast agents are increasingly associated with cutaneous abnormalities even outside of nephrogenic systemic fibrosis. Gd-associated plaques develop in patients without kidney disease—these range from asymptomatic, pruritic, to burning.¹³ Histologic specimens reveal CD68 and factor XIIIa–positive spindle-shaped myeloid cells (the same mediators of iatrogenic systemic fibrosis) or CD34-positive cells. CD68 and factor XIIIa are distinctive for histologic specimens from patients with systemic fibrosis, and these markers have been detected in our preclinical models that demonstrated that bone marrow–derived cells are involved in mediating fibrosis.^3,4,14-19 Similarly, CD34-positive cells have been historically associated with systemic fibrosis lesions.^15,16,18-23 Plump osteocyte-appearing cells have also been noted (note that extraosseous metaplasia makes the histologic diagnosis of systemic fibrosis).¹⁴ Nephrogenic systemic fibrosis is an iatrogenic disease that can manifest years after exposure to Gd.⁵ Gd induces the recruitment of bone marrow–derived cells to the affected sites.⁴

The VA Health Service Research and Development Evidence Synthesis Program reviewed the safety of Gd-based contrast agents in patients with impaired kidney function.^24,25 The group found only a single study of Gd and veterans. “Awareness and concern are growing about the long-term deposition of gadolinium in [the] brain and other tissues among patients with normal kidney function,” according to Lunyera and colleagues.²⁵ The largest knowledge gap was that a comprehensive review “of all potential harms associated with gadolinium exposure” was not addressed. Furthermore, the group advised “caution in the use of [Gd-based contrast agents] in patients with severely impaired kidney function and acute kidney injury remains prudent, because the exact clinical factors contributing to [nephrogenic systemic fibrosis] risk in these subpopulations are still unknown.”²⁵

Gd-based contrast agents—contrary to a widely held misconception—are not biologically inert.¹ Gd-based contrast agents have a long history of association with acute renal injury. We have demonstrated that systemic treatment with MRI contrast agents leads to vacuolization of the proximal tubule and tubular injury.^7,8 Kidney injury may be mediated by the generation of reactive oxygen species from NADPH oxidase 4 (Nox4).²⁶

Gd retention, Gd-induced multisymptomatic illnesses, Gd-associated plaques, Gd-induced neurotoxicity, and nephrogenic systemic fibrosis are part of a continuum (with Gd as the common thread)—a theme of the September 8, 2017, US Food and Drug Administration (FDA) Medical Imaging Drugs Advisory Committee meeting.²⁷ Patients, patient advocacy groups, and regulating agencies are concerned about long-term retention of a nonphysiologic rare earth element such as Gd.^28-30 A patient advocacy group, The Lighthouse Project, collected information from patients linking the last date of Gd-based contrast agent exposure and urinary Gd.¹¹ Data from their report suggest that the rate constants (valuable for the elimination equation above) are obtainable from 24-hour urine collections. Conceptually, Gd-induced diseases may represent a continuum that results from the retention of a nonphysiologic, toxic heavy rare earth metal.

As a heavy metal, Gd is not a natural physiologic trace element. Similar to numerous nonphysiologic metals, Gd is toxic. Inhaled Gd oxide (Gd₂O₃) dust leads to a number of time-dependent pathologies. Animal lung studies demonstrate reduced elasticity, enlarged cells, thickened lung walls, and recruitment of immune cells.³¹ Symptoms of acute IV Gd toxicity include decreased respiration, lethargy, abdominal cramps, and diarrhea.³² Pharmacologically, Gd concentrates in the liver and kidney and accumulates in the bone.³² Animals demonstrate intestinal depression and low blood pressure in response to Gd and, with higher doses, cardiovascular collapse.³² IV Gd chloride leads to metal deposition in the small blood vessels diffusely throughout the body, particularly in the lung and kidney and the metal is absorbed by the scavenging white blood cells.³³ Gd chloride induces severe damage to the liver, spleen, and the digestive tract.³³ Furthermore, this form of the toxicant metal markedly impacted functions associated with bleeding and clotting, ie, decreased platelet numbers and an increase in the laboratory-measured coagulation parameters.³³ Semelka and colleagues have characterized chronic symptoms attributed to Gd-based contrast agents (not limited to chronic pain, headache, bone pain, skin thickening, and clouded mentation).^34,35 Because Gd-induced conditions are underrecognized and ill-defined, disinherited patients often resort to untested (and potentially dangerous) chelation therapies.³⁶

This patient presented with numerous symptoms that arose after Gd exposure. It is well established that Gd-based contrast agents (of any class) are retained in multiple organs (including the brain), for months to years. Gd-based contrast agents enter the cerebrospinal fluid within minutes of IV administration.³⁷ Gd was found in the cerebrospinal fluid 9 months after administration in a case presented to the FDA Medical Imaging Drugs Advisory Committee.³⁸ We know from intentional and accidental intrathecal administrations that Gd-based contrast agents are neurotoxic.³⁹ Runge and colleagues demonstrated that Gd-based contrast agents exert mitochondrial toxicity in cultured neurons in vitro.⁴⁰ McDonald and his team found Gd-rich nanoparticles within the brain neurons (cytoplasm and nuclei) from patients exposed to MRI contrast in the normal course of care.⁴¹ These nanoparticles are similar to what we have found in rodent models of Gd-induced disease.^7,8,42

Patient Perspective

“Seems like it’s one thing after another. My family doctor said that once I had the gadolinium exposures, I have had problems ever since that I don’t recover from.” This includes chronic numbness from the rectum to the bilateral lower extremities and an indolent worsening kidney function; “I have already developed stage 3B chronic kidney disease.” Similar to many suffering with gadolinium retention, the patient was concerned about the long-term consequences. Gadolinium “is a toxic metal that is going through my body for 4 years. That has to be a problem. How come we don’t have that answer?” Clinician ignorance of Gd-induced complications and long-term retention is frustrating. “Not one of my doctors has taken gadolinium retention seriously. Where else are patients supposed to go?”

Conclusions

Health care professionals should be considering subclinical manifestations of nephrogenic systemic fibrosis or open to considering that intracellular neuronal retention of Gd may correlate with symptoms arising after MRI contrast exposures. The science concerning the mechanisms of how Gd exerts its pathologic effects is lagging behind the commercialization of enhancing Gd elimination (ie, chelation therapies) and other untested remedies. Practitioners need to acknowledge the unknown potential consequences of Gd and listen to patients who suspect chronic adverse effects.

Hospital leaders report the most common aim of peer review (PR) is to improve quality and patient safety, thus it is a potentially powerful quality improvement (QI) driver.¹ “When conducted systematically and credibly, peer review for quality management can result in both short-term and long-term improvements in patient care by revealing areas for improvement in the provision of care,” Veterans Health Administration (VHA) Directive 1190 states. “This ultimately contributes to organizational improvements.” At the same time, there are anecdotal concerns that PR may be used punitively and driven by case outcomes rather than by accepted best practices supporting QI.

Studies of the PR process suggest these concerns are valid. A key tenet of QI is standardization. PR is problematic in that regard; studies show poor interrater reliability for judgments on care, as well as hindsight bias—the fact that raters are strongly influenced by the outcome of care, not the process of care.^2-5 There are concerns that case selection or review process when not standardized may be wielded as punitive too.⁶ In this study, we sought to identify the relationship between PR findings and subsequent institution quality metrics. If PR does lead to an improvement in quality, or if quality concerns are managed within the PR committee, it should be possible to identify a measurable relationship between the PR process and a facility’s subsequent quality measures.

A handful of studies describe the association between PR and quality of care. Itri and colleagues noted that random, not standardized PR in radiology does not achieve reductions in diagnostic error rate.⁷ However, adoption of just culture principles in PR resulted in a significant improvement in facility leaders’ self-reports of quality measures at surveyed institutions.⁸ The same author reported that increases in PR standardization and integration with performance improvement activities could explain up to 18% of objective quality measure variation.⁹

We sought to determine whether a specific aspect of the PR process, the PR committee judgment of quality of care by clinicians, was related to medical center quality in a cross-sectional study of 136 Veterans Health Administration (VHA) medical centers. The VHA is a good source of study because there are standardized PR processes and training for committee members and reviewers. Our hypothesis was that medical centers with a higher number of Level 2 (“most experienced and competent clinicians might have managed the case differently”) and Level 3 (“most experienced and competent providers would have managed the case differently”) PR findings would also have lower quality metric scores for processes and outcomes of care.

Methods

We used PR data from fiscal year 2018 and 2019. VHA PR data are available quarterly and are self-reported by each facility to the VHA Office of Clinical Risk Management. These data are broken down by facility. The following data, when available in both fiscal years 2018 and 2019, were used for this analysis: percent and number of PR that are ranked as level 1, 2, or 3; medical center group (MCG) acuity measure assigned by the VHA (1 is highest, 3 is lowest); and number of PR per 100,000 unique veteran encounters in 2019. Measures of facility quality are drawn from Strategic Analytics for Improvement and Learning (SAIL) data from 2019, which are available quarterly by facility and are rolling for 12 months. SAIL measures processes and outcomes of care. Table 1 indicates which measures are focused on outcomes vs quality processes.

SAS Version 9.2 was used to perform statistical analyses. We used Spearman correlation to estimate the PR and quality relationship.

Results

There were 136 facilities with 2 years of PR data available. The majority of these facilities (89) were highest complexity MCG 1 facilities; 19 were MCG 2, and 28 were MCG 3. Of 13,515 PRs, most of the 9555 PR findings were level 1 (70.7%). The between-facility range of level 2 and 3 findings was large, varying from 3.5% to nearly 70% in 2019 (Table 2). Findings were similar in 2018; facilities level 2 and 3 ratings ranged from 3.6% to 73.5% of all PR findings.

There was no correlation between most quality measures and facility PR findings (Table 3). The only exception was for Global Measures (GM90), an inpatient process of care measure. Unexpectedly, the correlation was positive—facilities with a higher percentage of level 2 and 3 PR findings had better inpatient processes of care SAIL score. The strongest correlation was between 2018 and 2019 PR findings.

Discussion

We hypothesized that a high percentage of level 2 and 3 PR findings would be negatively associated with objective facility measures of care processes in SAIL but we did not see this association. The only quality measure associated with PR findings was GM90, a score of inpatient care processes. However, the association was positive, with better performance associated with more level 2 and 3 PR findings.

The best predictor of the proportion of a facility’s PR findings is the previous year’s PR findings. With an R = 0.59, the previous year findings explain about 35% of the variability in level assignment. Our analysis may describe a new bias in PR, in which committees consistently assign either low or high proportions of level 2 and 3 findings. This correlation could be due to individual PR committee culture or composition, but it does not relate to objective quality measures.

Strengths

For this study we use objective measures of PR processes, the assignment of levels of care. PR findings should reflect not only outcomes, but also the quality of the care, reflected by adherence to evidence-based processes, such as angiotensin-converting enzyme inhibitor prescription in heart failure. Therefore, we used SAIL scores, an objective and standardized process and outcome quality measures. Additionally, VHA is likely a national leader in the standardization of PR: VHA mandates as well as provides training for reviewers and PR committee members, has a standardized case-referral process, and mandates the documentation of feedback to health care professionals when care did not meet standards. While other publications show that PR has poor interrater reliability, VHA provides an outside contract to perform a second review on a percentage of cases to improve the validity of PR level assignments.

Limitations

Facilities self-report PR outcomes, so there could be errors in reporting. In addition, this study was cross sectional and not longitudinal and it is possible that change in quality measures over time are correlated with PR findings. Future studies using the VHA PR and SAIL data could evaluate whether changes over time, and perhaps in response to level 2 and 3 findings, would be a more sensitive indicator of the impact of the PR process on quality metrics. Future studies could incorporate the relationship between findings from the All Employee Survey, which is conducted annually, such as psychologic safety, as well as the distance the facility has gone on the high reliability organization journey, with PR findings and SAIL metrics. Finally, PR is focused on the practice of an individual clinician, while SAIL quality metrics reflect facility performance. Interventions possibly stay at the clinician level and do not drive subsequent QI processes. This is a missed opportunity, and future studies could evaluate practices by the PR coordinators to determine whether differences in these processes are associated with quality measures.

What does this mean for PR? Since the early 1990s, there have been exhortations from experts to improve PR, by adopting a QI model, or for a deeper integration of PR and QI.^1,2,10 Just culture tools, which include QI, are promoted as a means to improve PR.^8,11,12 Other studies show PR remains problematic in terms of standardization, incorporation of best practices, redesigning systems of care, or demonstrable improvements to facility safety and care quality.^1,4,6,8 Several publications have described interventions to improve PR. Deyo-Svedson discussed a program with standardized training and triggers, much like VHA.¹³ Itri and colleagues standardized PR in radiology to target areas of known diagnostic error, as well as use the issues assessed in PR to perform QI and education. One example of a successful QI effort involved changing the radiology reporting template to make sure areas that are prone to diagnostic error are addressed.⁷

Conclusions

Since 35% of PR level variance is correlated with prior year’s results, PR committees should look at increased standardization in reviews and findings. We endorse a strong focus on standardization, application of just culture tools to case reviews, and tighter linkage between process and outcome metrics measured by SAIL and PR case finding. Studies should be performed to pilot interventions to improve the linkage between PR and quality, so that greater and faster gains can be made in quality processes and, leading from this, outcomes. Additionally, future research should investigate why some facilities consistently choose higher or lower PR ratings.

Acknowledgments

We acknowledge Dr. George “Web” Ross for his helpful edits.

Hospital leaders report the most common aim of peer review (PR) is to improve quality and patient safety, thus it is a potentially powerful quality improvement (QI) driver.¹ “When conducted systematically and credibly, peer review for quality management can result in both short-term and long-term improvements in patient care by revealing areas for improvement in the provision of care,” Veterans Health Administration (VHA) Directive 1190 states. “This ultimately contributes to organizational improvements.” At the same time, there are anecdotal concerns that PR may be used punitively and driven by case outcomes rather than by accepted best practices supporting QI.

Studies of the PR process suggest these concerns are valid. A key tenet of QI is standardization. PR is problematic in that regard; studies show poor interrater reliability for judgments on care, as well as hindsight bias—the fact that raters are strongly influenced by the outcome of care, not the process of care.^2-5 There are concerns that case selection or review process when not standardized may be wielded as punitive too.⁶ In this study, we sought to identify the relationship between PR findings and subsequent institution quality metrics. If PR does lead to an improvement in quality, or if quality concerns are managed within the PR committee, it should be possible to identify a measurable relationship between the PR process and a facility’s subsequent quality measures.

A handful of studies describe the association between PR and quality of care. Itri and colleagues noted that random, not standardized PR in radiology does not achieve reductions in diagnostic error rate.⁷ However, adoption of just culture principles in PR resulted in a significant improvement in facility leaders’ self-reports of quality measures at surveyed institutions.⁸ The same author reported that increases in PR standardization and integration with performance improvement activities could explain up to 18% of objective quality measure variation.⁹

We sought to determine whether a specific aspect of the PR process, the PR committee judgment of quality of care by clinicians, was related to medical center quality in a cross-sectional study of 136 Veterans Health Administration (VHA) medical centers. The VHA is a good source of study because there are standardized PR processes and training for committee members and reviewers. Our hypothesis was that medical centers with a higher number of Level 2 (“most experienced and competent clinicians might have managed the case differently”) and Level 3 (“most experienced and competent providers would have managed the case differently”) PR findings would also have lower quality metric scores for processes and outcomes of care.

Methods

We used PR data from fiscal year 2018 and 2019. VHA PR data are available quarterly and are self-reported by each facility to the VHA Office of Clinical Risk Management. These data are broken down by facility. The following data, when available in both fiscal years 2018 and 2019, were used for this analysis: percent and number of PR that are ranked as level 1, 2, or 3; medical center group (MCG) acuity measure assigned by the VHA (1 is highest, 3 is lowest); and number of PR per 100,000 unique veteran encounters in 2019. Measures of facility quality are drawn from Strategic Analytics for Improvement and Learning (SAIL) data from 2019, which are available quarterly by facility and are rolling for 12 months. SAIL measures processes and outcomes of care. Table 1 indicates which measures are focused on outcomes vs quality processes.

SAS Version 9.2 was used to perform statistical analyses. We used Spearman correlation to estimate the PR and quality relationship.

Results

There were 136 facilities with 2 years of PR data available. The majority of these facilities (89) were highest complexity MCG 1 facilities; 19 were MCG 2, and 28 were MCG 3. Of 13,515 PRs, most of the 9555 PR findings were level 1 (70.7%). The between-facility range of level 2 and 3 findings was large, varying from 3.5% to nearly 70% in 2019 (Table 2). Findings were similar in 2018; facilities level 2 and 3 ratings ranged from 3.6% to 73.5% of all PR findings.

There was no correlation between most quality measures and facility PR findings (Table 3). The only exception was for Global Measures (GM90), an inpatient process of care measure. Unexpectedly, the correlation was positive—facilities with a higher percentage of level 2 and 3 PR findings had better inpatient processes of care SAIL score. The strongest correlation was between 2018 and 2019 PR findings.

Discussion

We hypothesized that a high percentage of level 2 and 3 PR findings would be negatively associated with objective facility measures of care processes in SAIL but we did not see this association. The only quality measure associated with PR findings was GM90, a score of inpatient care processes. However, the association was positive, with better performance associated with more level 2 and 3 PR findings.

The best predictor of the proportion of a facility’s PR findings is the previous year’s PR findings. With an R = 0.59, the previous year findings explain about 35% of the variability in level assignment. Our analysis may describe a new bias in PR, in which committees consistently assign either low or high proportions of level 2 and 3 findings. This correlation could be due to individual PR committee culture or composition, but it does not relate to objective quality measures.

Strengths

For this study we use objective measures of PR processes, the assignment of levels of care. PR findings should reflect not only outcomes, but also the quality of the care, reflected by adherence to evidence-based processes, such as angiotensin-converting enzyme inhibitor prescription in heart failure. Therefore, we used SAIL scores, an objective and standardized process and outcome quality measures. Additionally, VHA is likely a national leader in the standardization of PR: VHA mandates as well as provides training for reviewers and PR committee members, has a standardized case-referral process, and mandates the documentation of feedback to health care professionals when care did not meet standards. While other publications show that PR has poor interrater reliability, VHA provides an outside contract to perform a second review on a percentage of cases to improve the validity of PR level assignments.

Limitations

Facilities self-report PR outcomes, so there could be errors in reporting. In addition, this study was cross sectional and not longitudinal and it is possible that change in quality measures over time are correlated with PR findings. Future studies using the VHA PR and SAIL data could evaluate whether changes over time, and perhaps in response to level 2 and 3 findings, would be a more sensitive indicator of the impact of the PR process on quality metrics. Future studies could incorporate the relationship between findings from the All Employee Survey, which is conducted annually, such as psychologic safety, as well as the distance the facility has gone on the high reliability organization journey, with PR findings and SAIL metrics. Finally, PR is focused on the practice of an individual clinician, while SAIL quality metrics reflect facility performance. Interventions possibly stay at the clinician level and do not drive subsequent QI processes. This is a missed opportunity, and future studies could evaluate practices by the PR coordinators to determine whether differences in these processes are associated with quality measures.

What does this mean for PR? Since the early 1990s, there have been exhortations from experts to improve PR, by adopting a QI model, or for a deeper integration of PR and QI.^1,2,10 Just culture tools, which include QI, are promoted as a means to improve PR.^8,11,12 Other studies show PR remains problematic in terms of standardization, incorporation of best practices, redesigning systems of care, or demonstrable improvements to facility safety and care quality.^1,4,6,8 Several publications have described interventions to improve PR. Deyo-Svedson discussed a program with standardized training and triggers, much like VHA.¹³ Itri and colleagues standardized PR in radiology to target areas of known diagnostic error, as well as use the issues assessed in PR to perform QI and education. One example of a successful QI effort involved changing the radiology reporting template to make sure areas that are prone to diagnostic error are addressed.⁷

Conclusions

Since 35% of PR level variance is correlated with prior year’s results, PR committees should look at increased standardization in reviews and findings. We endorse a strong focus on standardization, application of just culture tools to case reviews, and tighter linkage between process and outcome metrics measured by SAIL and PR case finding. Studies should be performed to pilot interventions to improve the linkage between PR and quality, so that greater and faster gains can be made in quality processes and, leading from this, outcomes. Additionally, future research should investigate why some facilities consistently choose higher or lower PR ratings.

Acknowledgments

We acknowledge Dr. George “Web” Ross for his helpful edits.

Hospital leaders report the most common aim of peer review (PR) is to improve quality and patient safety, thus it is a potentially powerful quality improvement (QI) driver.¹ “When conducted systematically and credibly, peer review for quality management can result in both short-term and long-term improvements in patient care by revealing areas for improvement in the provision of care,” Veterans Health Administration (VHA) Directive 1190 states. “This ultimately contributes to organizational improvements.” At the same time, there are anecdotal concerns that PR may be used punitively and driven by case outcomes rather than by accepted best practices supporting QI.

Studies of the PR process suggest these concerns are valid. A key tenet of QI is standardization. PR is problematic in that regard; studies show poor interrater reliability for judgments on care, as well as hindsight bias—the fact that raters are strongly influenced by the outcome of care, not the process of care.^2-5 There are concerns that case selection or review process when not standardized may be wielded as punitive too.⁶ In this study, we sought to identify the relationship between PR findings and subsequent institution quality metrics. If PR does lead to an improvement in quality, or if quality concerns are managed within the PR committee, it should be possible to identify a measurable relationship between the PR process and a facility’s subsequent quality measures.

A handful of studies describe the association between PR and quality of care. Itri and colleagues noted that random, not standardized PR in radiology does not achieve reductions in diagnostic error rate.⁷ However, adoption of just culture principles in PR resulted in a significant improvement in facility leaders’ self-reports of quality measures at surveyed institutions.⁸ The same author reported that increases in PR standardization and integration with performance improvement activities could explain up to 18% of objective quality measure variation.⁹

We sought to determine whether a specific aspect of the PR process, the PR committee judgment of quality of care by clinicians, was related to medical center quality in a cross-sectional study of 136 Veterans Health Administration (VHA) medical centers. The VHA is a good source of study because there are standardized PR processes and training for committee members and reviewers. Our hypothesis was that medical centers with a higher number of Level 2 (“most experienced and competent clinicians might have managed the case differently”) and Level 3 (“most experienced and competent providers would have managed the case differently”) PR findings would also have lower quality metric scores for processes and outcomes of care.

Methods

We used PR data from fiscal year 2018 and 2019. VHA PR data are available quarterly and are self-reported by each facility to the VHA Office of Clinical Risk Management. These data are broken down by facility. The following data, when available in both fiscal years 2018 and 2019, were used for this analysis: percent and number of PR that are ranked as level 1, 2, or 3; medical center group (MCG) acuity measure assigned by the VHA (1 is highest, 3 is lowest); and number of PR per 100,000 unique veteran encounters in 2019. Measures of facility quality are drawn from Strategic Analytics for Improvement and Learning (SAIL) data from 2019, which are available quarterly by facility and are rolling for 12 months. SAIL measures processes and outcomes of care. Table 1 indicates which measures are focused on outcomes vs quality processes.

SAS Version 9.2 was used to perform statistical analyses. We used Spearman correlation to estimate the PR and quality relationship.

Results

There were 136 facilities with 2 years of PR data available. The majority of these facilities (89) were highest complexity MCG 1 facilities; 19 were MCG 2, and 28 were MCG 3. Of 13,515 PRs, most of the 9555 PR findings were level 1 (70.7%). The between-facility range of level 2 and 3 findings was large, varying from 3.5% to nearly 70% in 2019 (Table 2). Findings were similar in 2018; facilities level 2 and 3 ratings ranged from 3.6% to 73.5% of all PR findings.

There was no correlation between most quality measures and facility PR findings (Table 3). The only exception was for Global Measures (GM90), an inpatient process of care measure. Unexpectedly, the correlation was positive—facilities with a higher percentage of level 2 and 3 PR findings had better inpatient processes of care SAIL score. The strongest correlation was between 2018 and 2019 PR findings.

Discussion

We hypothesized that a high percentage of level 2 and 3 PR findings would be negatively associated with objective facility measures of care processes in SAIL but we did not see this association. The only quality measure associated with PR findings was GM90, a score of inpatient care processes. However, the association was positive, with better performance associated with more level 2 and 3 PR findings.

The best predictor of the proportion of a facility’s PR findings is the previous year’s PR findings. With an R = 0.59, the previous year findings explain about 35% of the variability in level assignment. Our analysis may describe a new bias in PR, in which committees consistently assign either low or high proportions of level 2 and 3 findings. This correlation could be due to individual PR committee culture or composition, but it does not relate to objective quality measures.

Strengths

For this study we use objective measures of PR processes, the assignment of levels of care. PR findings should reflect not only outcomes, but also the quality of the care, reflected by adherence to evidence-based processes, such as angiotensin-converting enzyme inhibitor prescription in heart failure. Therefore, we used SAIL scores, an objective and standardized process and outcome quality measures. Additionally, VHA is likely a national leader in the standardization of PR: VHA mandates as well as provides training for reviewers and PR committee members, has a standardized case-referral process, and mandates the documentation of feedback to health care professionals when care did not meet standards. While other publications show that PR has poor interrater reliability, VHA provides an outside contract to perform a second review on a percentage of cases to improve the validity of PR level assignments.

Limitations

Facilities self-report PR outcomes, so there could be errors in reporting. In addition, this study was cross sectional and not longitudinal and it is possible that change in quality measures over time are correlated with PR findings. Future studies using the VHA PR and SAIL data could evaluate whether changes over time, and perhaps in response to level 2 and 3 findings, would be a more sensitive indicator of the impact of the PR process on quality metrics. Future studies could incorporate the relationship between findings from the All Employee Survey, which is conducted annually, such as psychologic safety, as well as the distance the facility has gone on the high reliability organization journey, with PR findings and SAIL metrics. Finally, PR is focused on the practice of an individual clinician, while SAIL quality metrics reflect facility performance. Interventions possibly stay at the clinician level and do not drive subsequent QI processes. This is a missed opportunity, and future studies could evaluate practices by the PR coordinators to determine whether differences in these processes are associated with quality measures.

What does this mean for PR? Since the early 1990s, there have been exhortations from experts to improve PR, by adopting a QI model, or for a deeper integration of PR and QI.^1,2,10 Just culture tools, which include QI, are promoted as a means to improve PR.^8,11,12 Other studies show PR remains problematic in terms of standardization, incorporation of best practices, redesigning systems of care, or demonstrable improvements to facility safety and care quality.^1,4,6,8 Several publications have described interventions to improve PR. Deyo-Svedson discussed a program with standardized training and triggers, much like VHA.¹³ Itri and colleagues standardized PR in radiology to target areas of known diagnostic error, as well as use the issues assessed in PR to perform QI and education. One example of a successful QI effort involved changing the radiology reporting template to make sure areas that are prone to diagnostic error are addressed.⁷

Conclusions

Since 35% of PR level variance is correlated with prior year’s results, PR committees should look at increased standardization in reviews and findings. We endorse a strong focus on standardization, application of just culture tools to case reviews, and tighter linkage between process and outcome metrics measured by SAIL and PR case finding. Studies should be performed to pilot interventions to improve the linkage between PR and quality, so that greater and faster gains can be made in quality processes and, leading from this, outcomes. Additionally, future research should investigate why some facilities consistently choose higher or lower PR ratings.

Acknowledgments

We acknowledge Dr. George “Web” Ross for his helpful edits.

Contemporary critiques of Memorial and Veterans Day celebrations have emphasized that while ceremonies and celebrations are culturally requisite means of demonstrating a society’s respect and gratitude for those who gave their lives and health in the country’s cause—it is not enough. These holidays have immense symbolic significance to remind the nation of the sacrifice of those who bore arms in its service. An enduring and substantive impact on veterans will require real work done on their behalf. Through its representative institutions, such as the US Departments of Defense (DoD) and Veterans Affairs (VA) and citizens’ voluntary efforts, the public must provide practical assistance to veterans and their families.²

Memorial Day honors our sacred dead who lost their lives defending freedom. In federal practice and the larger community, we are duty-bound to try and restore the things war took from these wounded warriors and in whatever measure is possible to return them to the land of the fully living. Except in memory, we cannot bring back the dead. And while life is the most precious gift, those who survived the battlefield too often lose much that matters to a meaningful human life—friends, family, livelihood, housing, self-worth, peace of heart, soundness of mind, and health of the body.

One such recent initiative of reclamation is the Green Alert. Readers are likely familiar with Amber alerts for abducted children and Silver Alerts for older adults often with cognitive impairment who are lost. The Green Alert is a similar program deploying media and law enforcement to search for missing veterans believed to be vulnerable to harm because of a medical or psychiatric illness related to their service.

In 2017 Wisconsin became the first state to pass Green Alert legislation. The Missing Veterans at Risk Act lists 2 criteria that trigger a Green Alert: There is a reason to believe that the veteran at risk is missing due to a physical or mental health condition or that the veteran at risk is missing due to a physical or mental health condition. Relevant to the readers of Federal Practitioner, in Wisconsin, Green Alerts can be issued on behalf of missing veterans, and active-duty guard and reserve members and thus cover almost all the ranks of US military service.³ When law enforcement receives a report of a missing veteran as defined in the act within 72 hours of their disappearance, a Green Alert is issued. The statute directs the US Department of Justice to permit law enforcement to access the crime notification network to notify the media to broadcast pertinent information about the missing veteran.

As of this writing, Delaware, Kentucky, Connecticut, and Texas have passed similar laws, and legislatures in other states are considering bills, as is Congress.⁴ The sponsorship of the National Green Alert Act is bipartisan. Its stated purpose is: to develop interagency Green Alert systems that would be used when a veteran “goes missing” and “for other purposes.”⁵

The program’s potential to reduce the number of veterans who die by suicide every day has understandably attracted the attention of legislators and the public.⁶ The Cost of War project disclosed the terrible irony that at least 4 times as many post-9/11 service members died by suicide as perished in the combat that Memorial Day traditionally commemorates.⁷ As with many veteran-related laws, the initial Green Alert in Wisconsin was borne out of tragedy and passed through the heroic advocacy of bereaved and outraged family members.⁸ The DoD and VA, Congress, veterans service organizations, and the loved ones of servicemembers desperately want to turn this devastating tide of self-destruction through any means possible.

It seems almost a blasphemous betrayal of our public trust to raise ethical questions about Green Alerts. Yet that must happen if we ensure that these laws achieve their intended aims of preventing harm. For many veterans, these laws may indeed be lifesaving. However, a 2019 National Public Radio report suggested that these laws may, in some cases, result in several unintended harms.⁹ On first reading, it is worthy, even our duty, to extend the public health safety net for children who are victims of abduction and individuals with dementia to vulnerable veterans secondary to the mental and physical wounds of service.

When the service member is located, the alert is canceled. Nevertheless, their data remains in all the protean forms of media now available. In these searches for service members thought to be lost, there is a risk of violating their privacy if too much protected health information is made widely public. These breaches of confidentiality can further exacerbate the already too prevalent stigmatization of mental illness in the military, which has been a formidable obstacle to persuading those in uniform to seek treatment.¹⁰ As J.R.R. Tolkien has noted, not every person who “wanders” is lost.¹ A veteran may leave his home for some period, even without notifying anyone, without being in grave and imminent danger. The diagnoses we health care professionals assign to patients are wide conceptual nets full of empirical holes: they are poorly predictive and protective mechanisms.¹¹ A broadly written or vague law leaves latitude for bias, discrimination, liability, and fear to drive decisions that to be ethically justifiable require consistency, transparency, equity, and expertise. Much more research is needed to develop situational awareness, scientific accuracy, and clinical reliability to understand when, how, and for whom Green Alerts are genuinely beneficial.

These are not insurmountable questions. The experts and stakeholders appointed to the interagency committee the national Green Alert proposes will work to address these problems. Yet, unless they and we look bravely at the thorny issues these laudable laws present, it will be challenging to achieve their purpose to safeguard the dignity, safety, as well as autonomy and well-being of service members.

Contemporary critiques of Memorial and Veterans Day celebrations have emphasized that while ceremonies and celebrations are culturally requisite means of demonstrating a society’s respect and gratitude for those who gave their lives and health in the country’s cause—it is not enough. These holidays have immense symbolic significance to remind the nation of the sacrifice of those who bore arms in its service. An enduring and substantive impact on veterans will require real work done on their behalf. Through its representative institutions, such as the US Departments of Defense (DoD) and Veterans Affairs (VA) and citizens’ voluntary efforts, the public must provide practical assistance to veterans and their families.²

Memorial Day honors our sacred dead who lost their lives defending freedom. In federal practice and the larger community, we are duty-bound to try and restore the things war took from these wounded warriors and in whatever measure is possible to return them to the land of the fully living. Except in memory, we cannot bring back the dead. And while life is the most precious gift, those who survived the battlefield too often lose much that matters to a meaningful human life—friends, family, livelihood, housing, self-worth, peace of heart, soundness of mind, and health of the body.

One such recent initiative of reclamation is the Green Alert. Readers are likely familiar with Amber alerts for abducted children and Silver Alerts for older adults often with cognitive impairment who are lost. The Green Alert is a similar program deploying media and law enforcement to search for missing veterans believed to be vulnerable to harm because of a medical or psychiatric illness related to their service.

In 2017 Wisconsin became the first state to pass Green Alert legislation. The Missing Veterans at Risk Act lists 2 criteria that trigger a Green Alert: There is a reason to believe that the veteran at risk is missing due to a physical or mental health condition or that the veteran at risk is missing due to a physical or mental health condition. Relevant to the readers of Federal Practitioner, in Wisconsin, Green Alerts can be issued on behalf of missing veterans, and active-duty guard and reserve members and thus cover almost all the ranks of US military service.³ When law enforcement receives a report of a missing veteran as defined in the act within 72 hours of their disappearance, a Green Alert is issued. The statute directs the US Department of Justice to permit law enforcement to access the crime notification network to notify the media to broadcast pertinent information about the missing veteran.

As of this writing, Delaware, Kentucky, Connecticut, and Texas have passed similar laws, and legislatures in other states are considering bills, as is Congress.⁴ The sponsorship of the National Green Alert Act is bipartisan. Its stated purpose is: to develop interagency Green Alert systems that would be used when a veteran “goes missing” and “for other purposes.”⁵

The program’s potential to reduce the number of veterans who die by suicide every day has understandably attracted the attention of legislators and the public.⁶ The Cost of War project disclosed the terrible irony that at least 4 times as many post-9/11 service members died by suicide as perished in the combat that Memorial Day traditionally commemorates.⁷ As with many veteran-related laws, the initial Green Alert in Wisconsin was borne out of tragedy and passed through the heroic advocacy of bereaved and outraged family members.⁸ The DoD and VA, Congress, veterans service organizations, and the loved ones of servicemembers desperately want to turn this devastating tide of self-destruction through any means possible.

It seems almost a blasphemous betrayal of our public trust to raise ethical questions about Green Alerts. Yet that must happen if we ensure that these laws achieve their intended aims of preventing harm. For many veterans, these laws may indeed be lifesaving. However, a 2019 National Public Radio report suggested that these laws may, in some cases, result in several unintended harms.⁹ On first reading, it is worthy, even our duty, to extend the public health safety net for children who are victims of abduction and individuals with dementia to vulnerable veterans secondary to the mental and physical wounds of service.

When the service member is located, the alert is canceled. Nevertheless, their data remains in all the protean forms of media now available. In these searches for service members thought to be lost, there is a risk of violating their privacy if too much protected health information is made widely public. These breaches of confidentiality can further exacerbate the already too prevalent stigmatization of mental illness in the military, which has been a formidable obstacle to persuading those in uniform to seek treatment.¹⁰ As J.R.R. Tolkien has noted, not every person who “wanders” is lost.¹ A veteran may leave his home for some period, even without notifying anyone, without being in grave and imminent danger. The diagnoses we health care professionals assign to patients are wide conceptual nets full of empirical holes: they are poorly predictive and protective mechanisms.¹¹ A broadly written or vague law leaves latitude for bias, discrimination, liability, and fear to drive decisions that to be ethically justifiable require consistency, transparency, equity, and expertise. Much more research is needed to develop situational awareness, scientific accuracy, and clinical reliability to understand when, how, and for whom Green Alerts are genuinely beneficial.

These are not insurmountable questions. The experts and stakeholders appointed to the interagency committee the national Green Alert proposes will work to address these problems. Yet, unless they and we look bravely at the thorny issues these laudable laws present, it will be challenging to achieve their purpose to safeguard the dignity, safety, as well as autonomy and well-being of service members.

Contemporary critiques of Memorial and Veterans Day celebrations have emphasized that while ceremonies and celebrations are culturally requisite means of demonstrating a society’s respect and gratitude for those who gave their lives and health in the country’s cause—it is not enough. These holidays have immense symbolic significance to remind the nation of the sacrifice of those who bore arms in its service. An enduring and substantive impact on veterans will require real work done on their behalf. Through its representative institutions, such as the US Departments of Defense (DoD) and Veterans Affairs (VA) and citizens’ voluntary efforts, the public must provide practical assistance to veterans and their families.²

Memorial Day honors our sacred dead who lost their lives defending freedom. In federal practice and the larger community, we are duty-bound to try and restore the things war took from these wounded warriors and in whatever measure is possible to return them to the land of the fully living. Except in memory, we cannot bring back the dead. And while life is the most precious gift, those who survived the battlefield too often lose much that matters to a meaningful human life—friends, family, livelihood, housing, self-worth, peace of heart, soundness of mind, and health of the body.

One such recent initiative of reclamation is the Green Alert. Readers are likely familiar with Amber alerts for abducted children and Silver Alerts for older adults often with cognitive impairment who are lost. The Green Alert is a similar program deploying media and law enforcement to search for missing veterans believed to be vulnerable to harm because of a medical or psychiatric illness related to their service.

In 2017 Wisconsin became the first state to pass Green Alert legislation. The Missing Veterans at Risk Act lists 2 criteria that trigger a Green Alert: There is a reason to believe that the veteran at risk is missing due to a physical or mental health condition or that the veteran at risk is missing due to a physical or mental health condition. Relevant to the readers of Federal Practitioner, in Wisconsin, Green Alerts can be issued on behalf of missing veterans, and active-duty guard and reserve members and thus cover almost all the ranks of US military service.³ When law enforcement receives a report of a missing veteran as defined in the act within 72 hours of their disappearance, a Green Alert is issued. The statute directs the US Department of Justice to permit law enforcement to access the crime notification network to notify the media to broadcast pertinent information about the missing veteran.

As of this writing, Delaware, Kentucky, Connecticut, and Texas have passed similar laws, and legislatures in other states are considering bills, as is Congress.⁴ The sponsorship of the National Green Alert Act is bipartisan. Its stated purpose is: to develop interagency Green Alert systems that would be used when a veteran “goes missing” and “for other purposes.”⁵

The program’s potential to reduce the number of veterans who die by suicide every day has understandably attracted the attention of legislators and the public.⁶ The Cost of War project disclosed the terrible irony that at least 4 times as many post-9/11 service members died by suicide as perished in the combat that Memorial Day traditionally commemorates.⁷ As with many veteran-related laws, the initial Green Alert in Wisconsin was borne out of tragedy and passed through the heroic advocacy of bereaved and outraged family members.⁸ The DoD and VA, Congress, veterans service organizations, and the loved ones of servicemembers desperately want to turn this devastating tide of self-destruction through any means possible.

It seems almost a blasphemous betrayal of our public trust to raise ethical questions about Green Alerts. Yet that must happen if we ensure that these laws achieve their intended aims of preventing harm. For many veterans, these laws may indeed be lifesaving. However, a 2019 National Public Radio report suggested that these laws may, in some cases, result in several unintended harms.⁹ On first reading, it is worthy, even our duty, to extend the public health safety net for children who are victims of abduction and individuals with dementia to vulnerable veterans secondary to the mental and physical wounds of service.

When the service member is located, the alert is canceled. Nevertheless, their data remains in all the protean forms of media now available. In these searches for service members thought to be lost, there is a risk of violating their privacy if too much protected health information is made widely public. These breaches of confidentiality can further exacerbate the already too prevalent stigmatization of mental illness in the military, which has been a formidable obstacle to persuading those in uniform to seek treatment.¹⁰ As J.R.R. Tolkien has noted, not every person who “wanders” is lost.¹ A veteran may leave his home for some period, even without notifying anyone, without being in grave and imminent danger. The diagnoses we health care professionals assign to patients are wide conceptual nets full of empirical holes: they are poorly predictive and protective mechanisms.¹¹ A broadly written or vague law leaves latitude for bias, discrimination, liability, and fear to drive decisions that to be ethically justifiable require consistency, transparency, equity, and expertise. Much more research is needed to develop situational awareness, scientific accuracy, and clinical reliability to understand when, how, and for whom Green Alerts are genuinely beneficial.

These are not insurmountable questions. The experts and stakeholders appointed to the interagency committee the national Green Alert proposes will work to address these problems. Yet, unless they and we look bravely at the thorny issues these laudable laws present, it will be challenging to achieve their purpose to safeguard the dignity, safety, as well as autonomy and well-being of service members.

While previous research suggests that dietary supplementation with L-serine may be beneficial for patients with Alzheimer’s disease (AD), a new study cast doubt on the potential efficacy, and even the safety, of this treatment.

When given to patients with AD, L-serine supplements could be driving abnormally increased serine levels in the brain even higher, potentially accelerating neuronal death, according to study author Xu Chen, PhD, of the University of California, San Diego, and colleagues.

This conclusion conflicts with a 2020 study by Juliette Le Douce, PhD, and colleagues, who reported that oral L-serine supplementation may act as a “ready-to-use therapy” for AD, based on their findings that patients with AD had low levels of PHGDH, an enzyme necessary for synthesizing serine, and AD-like mice had low levels of serine.

Writing in Cell Metabolism, Dr. Chen and colleagues framed the present study, and their findings, in this context.

“In contrast to the work of Le Douce et al., here we report that PHGDH mRNA and protein levels are increased in the brains of two mouse models of AD and/or tauopathy, and are also progressively increased in human brains with no, early, and late AD pathology, as well as in people with no, asymptomatic, and symptomatic AD,” they wrote.

They suggested adjusting clinical recommendations for L-serine, the form of the amino acid commonly found in supplements. In the body, L-serine is converted to D-serine, which acts on the NMDA receptor (NMDAR).

‘Long-term use of D-serine contributes to neuronal death’ suggests research

“We feel oral L-serine as a ready-to-use therapy to AD warrants precaution,” Dr. Chen and colleagues wrote. “This is because despite being a cognitive enhancer, some [research] suggests that long-term use of D-serine contributes to neuronal death in AD through excitotoxicity. Furthermore, D-serine, as a co-agonist of NMDAR, would be expected to oppose NMDAR antagonists, which have proven clinical benefits in treating AD.”

According to principal author Sheng Zhong, PhD, of the University of California, San Diego, “Research is needed to test if targeting PHGDH can ameliorate cognitive decline in AD.”

Dr. Zhong also noted that the present findings support the “promise of using a specific RNA in blood as a biomarker for early detection of Alzheimer’s disease.” This approach is currently being validated at UCSD Shiley-Marcos Alzheimer’s Disease Research Center, he added.

Roles of PHGDH and serine in Alzheimer’s disease require further study

Commenting on both studies, Steve W. Barger, PhD, of the University of Arkansas for Medical Sciences, Little Rock, suggested that more work is needed to better understand the roles of PHGDH and serine in AD before clinical applications can be considered.

“In the end, these two studies fail to provide the clarity we need in designing evidence-based therapeutic hypotheses,” Dr. Barger said in an interview. “We still do not have a firm grasp on the role that D-serine plays in AD. Indeed, the evidence regarding even a single enzyme contributing to its levels is ambiguous.”

Dr. Barger, who has published extensively on the topic of neuronal death, with a particular focus on Alzheimer’s disease, noted that “determination of what happens to D-serine levels in AD has been of interest for decades,” but levels of the amino acid have been notoriously challenging to measure because “D-serine can disappear rapidly from the brain and its fluids after death.”

While Dr. Le Douce and colleagues did measure levels of serine in mice, Dr. Barger noted that the study by Dr. Chen and colleagues was conducted with more “quantitatively rigorous methods.” Even though Dr. Chen and colleagues “did not assay the levels of D-serine itself ... the implication of their findings is that PHGDH is poised to elevate this critical neurotransmitter,” leading to their conclusion that serine supplementation is “potentially dangerous.”

At this point, it may be too early to tell, according to Dr. Barger.

He suggested that conclusions drawn from PHGDH levels alone are “always limited,” and conclusions based on serine levels may be equally dubious, considering that the activities and effects of serine “are quite complex,” and may be influenced by other physiologic processes, including the effects of gut bacteria.

Instead, Dr. Barger suggested that changes in PHGDH and serine may be interpreted as signals coming from a more relevant process upstream: glucose metabolism.

“What we can say confidently is that the glucose metabolism that PHGDH connects to D-serine is most definitely a factor in AD,” he said. “Countless studies have documented what now appears to be a universal decline in glucose delivery to the cerebral cortex, even before frank dementia sets in.”

Dr. Barger noted that declining glucose delivery coincides with some of the earliest events in the development of AD, perhaps “linking accumulation of amyloid β-peptide to subsequent neurofibrillary tangles and tissue atrophy.”

Dr. Barger’s own work recently demonstrated that AD is associated with “an irregularity in the insertion of a specific glucose transporter (GLUT1) into the cell surface” of astrocytes.

“It could be more effective to direct therapeutic interventions at these events lying upstream of PHGDH or serine,” he concluded.

The study was partly supported by a Kreuger v. Wyeth research award. The investigators and Dr. Barger reported no conflicts of interest.

While previous research suggests that dietary supplementation with L-serine may be beneficial for patients with Alzheimer’s disease (AD), a new study cast doubt on the potential efficacy, and even the safety, of this treatment.

When given to patients with AD, L-serine supplements could be driving abnormally increased serine levels in the brain even higher, potentially accelerating neuronal death, according to study author Xu Chen, PhD, of the University of California, San Diego, and colleagues.

This conclusion conflicts with a 2020 study by Juliette Le Douce, PhD, and colleagues, who reported that oral L-serine supplementation may act as a “ready-to-use therapy” for AD, based on their findings that patients with AD had low levels of PHGDH, an enzyme necessary for synthesizing serine, and AD-like mice had low levels of serine.

Writing in Cell Metabolism, Dr. Chen and colleagues framed the present study, and their findings, in this context.

“In contrast to the work of Le Douce et al., here we report that PHGDH mRNA and protein levels are increased in the brains of two mouse models of AD and/or tauopathy, and are also progressively increased in human brains with no, early, and late AD pathology, as well as in people with no, asymptomatic, and symptomatic AD,” they wrote.

They suggested adjusting clinical recommendations for L-serine, the form of the amino acid commonly found in supplements. In the body, L-serine is converted to D-serine, which acts on the NMDA receptor (NMDAR).

‘Long-term use of D-serine contributes to neuronal death’ suggests research

“We feel oral L-serine as a ready-to-use therapy to AD warrants precaution,” Dr. Chen and colleagues wrote. “This is because despite being a cognitive enhancer, some [research] suggests that long-term use of D-serine contributes to neuronal death in AD through excitotoxicity. Furthermore, D-serine, as a co-agonist of NMDAR, would be expected to oppose NMDAR antagonists, which have proven clinical benefits in treating AD.”

According to principal author Sheng Zhong, PhD, of the University of California, San Diego, “Research is needed to test if targeting PHGDH can ameliorate cognitive decline in AD.”

Dr. Zhong also noted that the present findings support the “promise of using a specific RNA in blood as a biomarker for early detection of Alzheimer’s disease.” This approach is currently being validated at UCSD Shiley-Marcos Alzheimer’s Disease Research Center, he added.

Roles of PHGDH and serine in Alzheimer’s disease require further study

Commenting on both studies, Steve W. Barger, PhD, of the University of Arkansas for Medical Sciences, Little Rock, suggested that more work is needed to better understand the roles of PHGDH and serine in AD before clinical applications can be considered.

“In the end, these two studies fail to provide the clarity we need in designing evidence-based therapeutic hypotheses,” Dr. Barger said in an interview. “We still do not have a firm grasp on the role that D-serine plays in AD. Indeed, the evidence regarding even a single enzyme contributing to its levels is ambiguous.”

Dr. Barger, who has published extensively on the topic of neuronal death, with a particular focus on Alzheimer’s disease, noted that “determination of what happens to D-serine levels in AD has been of interest for decades,” but levels of the amino acid have been notoriously challenging to measure because “D-serine can disappear rapidly from the brain and its fluids after death.”

While Dr. Le Douce and colleagues did measure levels of serine in mice, Dr. Barger noted that the study by Dr. Chen and colleagues was conducted with more “quantitatively rigorous methods.” Even though Dr. Chen and colleagues “did not assay the levels of D-serine itself ... the implication of their findings is that PHGDH is poised to elevate this critical neurotransmitter,” leading to their conclusion that serine supplementation is “potentially dangerous.”

At this point, it may be too early to tell, according to Dr. Barger.

He suggested that conclusions drawn from PHGDH levels alone are “always limited,” and conclusions based on serine levels may be equally dubious, considering that the activities and effects of serine “are quite complex,” and may be influenced by other physiologic processes, including the effects of gut bacteria.

Instead, Dr. Barger suggested that changes in PHGDH and serine may be interpreted as signals coming from a more relevant process upstream: glucose metabolism.

“What we can say confidently is that the glucose metabolism that PHGDH connects to D-serine is most definitely a factor in AD,” he said. “Countless studies have documented what now appears to be a universal decline in glucose delivery to the cerebral cortex, even before frank dementia sets in.”

Dr. Barger noted that declining glucose delivery coincides with some of the earliest events in the development of AD, perhaps “linking accumulation of amyloid β-peptide to subsequent neurofibrillary tangles and tissue atrophy.”

Dr. Barger’s own work recently demonstrated that AD is associated with “an irregularity in the insertion of a specific glucose transporter (GLUT1) into the cell surface” of astrocytes.

“It could be more effective to direct therapeutic interventions at these events lying upstream of PHGDH or serine,” he concluded.

The study was partly supported by a Kreuger v. Wyeth research award. The investigators and Dr. Barger reported no conflicts of interest.

While previous research suggests that dietary supplementation with L-serine may be beneficial for patients with Alzheimer’s disease (AD), a new study cast doubt on the potential efficacy, and even the safety, of this treatment.

When given to patients with AD, L-serine supplements could be driving abnormally increased serine levels in the brain even higher, potentially accelerating neuronal death, according to study author Xu Chen, PhD, of the University of California, San Diego, and colleagues.

This conclusion conflicts with a 2020 study by Juliette Le Douce, PhD, and colleagues, who reported that oral L-serine supplementation may act as a “ready-to-use therapy” for AD, based on their findings that patients with AD had low levels of PHGDH, an enzyme necessary for synthesizing serine, and AD-like mice had low levels of serine.

Writing in Cell Metabolism, Dr. Chen and colleagues framed the present study, and their findings, in this context.

“In contrast to the work of Le Douce et al., here we report that PHGDH mRNA and protein levels are increased in the brains of two mouse models of AD and/or tauopathy, and are also progressively increased in human brains with no, early, and late AD pathology, as well as in people with no, asymptomatic, and symptomatic AD,” they wrote.

They suggested adjusting clinical recommendations for L-serine, the form of the amino acid commonly found in supplements. In the body, L-serine is converted to D-serine, which acts on the NMDA receptor (NMDAR).

‘Long-term use of D-serine contributes to neuronal death’ suggests research

“We feel oral L-serine as a ready-to-use therapy to AD warrants precaution,” Dr. Chen and colleagues wrote. “This is because despite being a cognitive enhancer, some [research] suggests that long-term use of D-serine contributes to neuronal death in AD through excitotoxicity. Furthermore, D-serine, as a co-agonist of NMDAR, would be expected to oppose NMDAR antagonists, which have proven clinical benefits in treating AD.”

According to principal author Sheng Zhong, PhD, of the University of California, San Diego, “Research is needed to test if targeting PHGDH can ameliorate cognitive decline in AD.”

Dr. Zhong also noted that the present findings support the “promise of using a specific RNA in blood as a biomarker for early detection of Alzheimer’s disease.” This approach is currently being validated at UCSD Shiley-Marcos Alzheimer’s Disease Research Center, he added.

Roles of PHGDH and serine in Alzheimer’s disease require further study

Commenting on both studies, Steve W. Barger, PhD, of the University of Arkansas for Medical Sciences, Little Rock, suggested that more work is needed to better understand the roles of PHGDH and serine in AD before clinical applications can be considered.

“In the end, these two studies fail to provide the clarity we need in designing evidence-based therapeutic hypotheses,” Dr. Barger said in an interview. “We still do not have a firm grasp on the role that D-serine plays in AD. Indeed, the evidence regarding even a single enzyme contributing to its levels is ambiguous.”

Dr. Barger, who has published extensively on the topic of neuronal death, with a particular focus on Alzheimer’s disease, noted that “determination of what happens to D-serine levels in AD has been of interest for decades,” but levels of the amino acid have been notoriously challenging to measure because “D-serine can disappear rapidly from the brain and its fluids after death.”

While Dr. Le Douce and colleagues did measure levels of serine in mice, Dr. Barger noted that the study by Dr. Chen and colleagues was conducted with more “quantitatively rigorous methods.” Even though Dr. Chen and colleagues “did not assay the levels of D-serine itself ... the implication of their findings is that PHGDH is poised to elevate this critical neurotransmitter,” leading to their conclusion that serine supplementation is “potentially dangerous.”

At this point, it may be too early to tell, according to Dr. Barger.

He suggested that conclusions drawn from PHGDH levels alone are “always limited,” and conclusions based on serine levels may be equally dubious, considering that the activities and effects of serine “are quite complex,” and may be influenced by other physiologic processes, including the effects of gut bacteria.

Instead, Dr. Barger suggested that changes in PHGDH and serine may be interpreted as signals coming from a more relevant process upstream: glucose metabolism.

“What we can say confidently is that the glucose metabolism that PHGDH connects to D-serine is most definitely a factor in AD,” he said. “Countless studies have documented what now appears to be a universal decline in glucose delivery to the cerebral cortex, even before frank dementia sets in.”

Dr. Barger noted that declining glucose delivery coincides with some of the earliest events in the development of AD, perhaps “linking accumulation of amyloid β-peptide to subsequent neurofibrillary tangles and tissue atrophy.”

Dr. Barger’s own work recently demonstrated that AD is associated with “an irregularity in the insertion of a specific glucose transporter (GLUT1) into the cell surface” of astrocytes.

“It could be more effective to direct therapeutic interventions at these events lying upstream of PHGDH or serine,” he concluded.

The study was partly supported by a Kreuger v. Wyeth research award. The investigators and Dr. Barger reported no conflicts of interest.

Children with juvenile idiopathic arthritis (JIA) who need a tumor necrosis factor (TNF) inhibitor after failing conventional disease-modifying antirheumatic drug (DMARD) treatment often experience insurance delays before beginning the new drug because of prior authorization denials, according to research presented at the 2022 annual meeting of the Childhood Arthritis and Rheumatology Research Alliance (CARRA). The findings were also published  as a research letter in JAMA Network Open.

“Prompt escalation to TNF inhibitors is recommended for children with JIA refractory to DMARDs,” author Jordan Roberts, MD, a clinical fellow of the Harvard Medical School Rheumatology Program, Boston, told CARRA attendees. TNF inhibitors are increasingly used as first-line treatment in JIA since growing evidence suggests better outcomes from early treatment with biologics. “Prior authorization requirements that delay TNF inhibitor initiation among children with JIA are common in clinical practice,” Dr. Roberts said, but little evidence exists to understand the extent of this problem and its causes.

The researchers therefore conducted a retrospective cohort study using a search of electronic health records from January 2018 to December 2019 to find all children at a single center with a new diagnosis of nonsystemic JIA. Then the authors pulled the timing of prior authorization requests, approvals, denials, and first TNF inhibitor dose from the medical notes. They also sought out any children who had been recommended a TNF inhibitor but never started one.

The total population included 54 children with an average age of 10 years, about two-thirds of whom had private insurance (63%). The group was predominantly White (63%), although 13% declined to provide race, and 7% were Hispanic. Most subtypes of disease were represented: oligoarticular persistent (28%), oligoarticular extended (2%), polyarticular rheumatoid factor-negative (15%), polyarticular rheumatoid factor-positive (15%), psoriatic arthritis (26%), enthesitis-related arthritis (12%), and undifferentiated arthritis (2%).

The 44 participants with private insurance had an average of two joints with active disease, while the 10 patients with public insurance had an average of four involved joints. Nearly all the patients (91%) had previously taken or were currently taking DMARDs when the prior authorization was submitted, and 61% had received NSAIDs.

All but one of the patients’ insurance plans required a prior authorization. The first prior authorization was denied for about one-third of the public insurance patients (30%) and a quarter of the private insurance patients. About 1 in 5 patients overall (22%) required a written appeal to override the denial, and 4% required peer-to-peer review. Meanwhile, 7% of patients began another medication because of the denial.

It took a median of 3 days for prior authorizations to be approved and a median of 24 days from the time the TNF inhibitor was recommended to the patient receiving the first dose. However, 22% of patients waited at least 2 weeks before the prior authorization was approved, and more than a quarter of the requests took over 30 days before the patient could begin the medication. In the public insurance group in particular, a quarter of children waited at least 19 days for approval and at least 44 days before starting the medication.

In fact, when the researchers looked at the difference in approval time between those who did and did not receive an initial denial, the difference was stark. Median approval time was 16 days when the prior authorization was denied, compared with a median of 5 days when the first prior authorization was approved. Similarly, time to initiation of the drug after recommendation was a median of 35 days for those whose prior authorization was first denied and 17 days for those with an initial approval.

The most common reason for an initial denial was the insurance company requiring a different TNF inhibitor than the one the rheumatologist wanted to prescribe. “These were all children whose rheumatologist has recommended either infliximab or etanercept that were required to use adalimumab instead,” Dr. Roberts said.

The other reasons for initial denial were similarly familiar ones:

• Required submission to another insurer
• Additional documentation required
• Lack of medical necessity
• Prescription was for an indication not approved by the Food and Drug Administration
• Age of patient
• Nonbiologic DMARD required
• NSAID required for step therapy

Only three children who were advised to begin a TNF inhibitor did not do so, including one who was lost to follow-up, one who had injection-related anxiety, and one who had safety concerns about the medication.

“Several children were required to use alternative TNF inhibitors than the one that was recommended due to restricted formularies, which may reduce shared decisionmaking between physicians and families and may not be the optimal clinical choice for an individual child,” Dr. Roberts said in her conclusion. Most children, however, were able to get approval for the TNF inhibitor originally requested, “suggesting that utilization management strategies present barriers to timely care despite appropriate specialty medication requests,” she said. “Therefore, it’s important for us to advocate for access to medications for children with JIA.”

Findings are not surprising

“I have these same experiences at my institution – often insurance will dictate clinical practice, and step therapy is the only option, causing a delay to initiation of TNFi even if we think, as the pediatric rheumatologist, that a child needs this medicine to be initiated on presentation to our clinic,” Nayimisha Balmuri, MD, assistant professor of pediatrics in the division of allergy, immunology, and rheumatology at the Johns Hopkins School of Medicine, Baltimore, told this news organization.

Dr. Balmuri, who was not involved in the study, noted that in her clinic at Johns Hopkins, it is hit or miss if an appeal to insurance companies or to the state (if it is Medicaid coverage) will be successful. “Unfortunately, [we are] mostly unsuccessful, and we have to try another DMARD for 8 to 12 weeks first before trying to get TNFi,” she said.

Dr. Balmuri called for bringing these issues to the attention of state and federal legislators. “It’s so important for us to continue to advocate for our patients at the state and national level! We are the advocates for our patients, and we are uniquely trained to know the best medications to initiate to help patients maximize their chance to reach remission of arthritis. Insurance companies need to hear our voices!”

Dr. Roberts reported grants from CARRA, the Lupus Foundation of America, and the National Institute of Allergy and Infectious Diseases during the conduct of the study.

A version of this article first appeared on Medscape.com.

Children with juvenile idiopathic arthritis (JIA) who need a tumor necrosis factor (TNF) inhibitor after failing conventional disease-modifying antirheumatic drug (DMARD) treatment often experience insurance delays before beginning the new drug because of prior authorization denials, according to research presented at the 2022 annual meeting of the Childhood Arthritis and Rheumatology Research Alliance (CARRA). The findings were also published  as a research letter in JAMA Network Open.

“Prompt escalation to TNF inhibitors is recommended for children with JIA refractory to DMARDs,” author Jordan Roberts, MD, a clinical fellow of the Harvard Medical School Rheumatology Program, Boston, told CARRA attendees. TNF inhibitors are increasingly used as first-line treatment in JIA since growing evidence suggests better outcomes from early treatment with biologics. “Prior authorization requirements that delay TNF inhibitor initiation among children with JIA are common in clinical practice,” Dr. Roberts said, but little evidence exists to understand the extent of this problem and its causes.

The researchers therefore conducted a retrospective cohort study using a search of electronic health records from January 2018 to December 2019 to find all children at a single center with a new diagnosis of nonsystemic JIA. Then the authors pulled the timing of prior authorization requests, approvals, denials, and first TNF inhibitor dose from the medical notes. They also sought out any children who had been recommended a TNF inhibitor but never started one.

The total population included 54 children with an average age of 10 years, about two-thirds of whom had private insurance (63%). The group was predominantly White (63%), although 13% declined to provide race, and 7% were Hispanic. Most subtypes of disease were represented: oligoarticular persistent (28%), oligoarticular extended (2%), polyarticular rheumatoid factor-negative (15%), polyarticular rheumatoid factor-positive (15%), psoriatic arthritis (26%), enthesitis-related arthritis (12%), and undifferentiated arthritis (2%).

The 44 participants with private insurance had an average of two joints with active disease, while the 10 patients with public insurance had an average of four involved joints. Nearly all the patients (91%) had previously taken or were currently taking DMARDs when the prior authorization was submitted, and 61% had received NSAIDs.

All but one of the patients’ insurance plans required a prior authorization. The first prior authorization was denied for about one-third of the public insurance patients (30%) and a quarter of the private insurance patients. About 1 in 5 patients overall (22%) required a written appeal to override the denial, and 4% required peer-to-peer review. Meanwhile, 7% of patients began another medication because of the denial.

It took a median of 3 days for prior authorizations to be approved and a median of 24 days from the time the TNF inhibitor was recommended to the patient receiving the first dose. However, 22% of patients waited at least 2 weeks before the prior authorization was approved, and more than a quarter of the requests took over 30 days before the patient could begin the medication. In the public insurance group in particular, a quarter of children waited at least 19 days for approval and at least 44 days before starting the medication.

In fact, when the researchers looked at the difference in approval time between those who did and did not receive an initial denial, the difference was stark. Median approval time was 16 days when the prior authorization was denied, compared with a median of 5 days when the first prior authorization was approved. Similarly, time to initiation of the drug after recommendation was a median of 35 days for those whose prior authorization was first denied and 17 days for those with an initial approval.

The most common reason for an initial denial was the insurance company requiring a different TNF inhibitor than the one the rheumatologist wanted to prescribe. “These were all children whose rheumatologist has recommended either infliximab or etanercept that were required to use adalimumab instead,” Dr. Roberts said.

The other reasons for initial denial were similarly familiar ones:

• Required submission to another insurer
• Additional documentation required
• Lack of medical necessity
• Prescription was for an indication not approved by the Food and Drug Administration
• Age of patient
• Nonbiologic DMARD required
• NSAID required for step therapy

Only three children who were advised to begin a TNF inhibitor did not do so, including one who was lost to follow-up, one who had injection-related anxiety, and one who had safety concerns about the medication.

“Several children were required to use alternative TNF inhibitors than the one that was recommended due to restricted formularies, which may reduce shared decisionmaking between physicians and families and may not be the optimal clinical choice for an individual child,” Dr. Roberts said in her conclusion. Most children, however, were able to get approval for the TNF inhibitor originally requested, “suggesting that utilization management strategies present barriers to timely care despite appropriate specialty medication requests,” she said. “Therefore, it’s important for us to advocate for access to medications for children with JIA.”

Findings are not surprising

“I have these same experiences at my institution – often insurance will dictate clinical practice, and step therapy is the only option, causing a delay to initiation of TNFi even if we think, as the pediatric rheumatologist, that a child needs this medicine to be initiated on presentation to our clinic,” Nayimisha Balmuri, MD, assistant professor of pediatrics in the division of allergy, immunology, and rheumatology at the Johns Hopkins School of Medicine, Baltimore, told this news organization.

Dr. Balmuri, who was not involved in the study, noted that in her clinic at Johns Hopkins, it is hit or miss if an appeal to insurance companies or to the state (if it is Medicaid coverage) will be successful. “Unfortunately, [we are] mostly unsuccessful, and we have to try another DMARD for 8 to 12 weeks first before trying to get TNFi,” she said.

Dr. Balmuri called for bringing these issues to the attention of state and federal legislators. “It’s so important for us to continue to advocate for our patients at the state and national level! We are the advocates for our patients, and we are uniquely trained to know the best medications to initiate to help patients maximize their chance to reach remission of arthritis. Insurance companies need to hear our voices!”

Dr. Roberts reported grants from CARRA, the Lupus Foundation of America, and the National Institute of Allergy and Infectious Diseases during the conduct of the study.

A version of this article first appeared on Medscape.com.

Children with juvenile idiopathic arthritis (JIA) who need a tumor necrosis factor (TNF) inhibitor after failing conventional disease-modifying antirheumatic drug (DMARD) treatment often experience insurance delays before beginning the new drug because of prior authorization denials, according to research presented at the 2022 annual meeting of the Childhood Arthritis and Rheumatology Research Alliance (CARRA). The findings were also published  as a research letter in JAMA Network Open.

“Prompt escalation to TNF inhibitors is recommended for children with JIA refractory to DMARDs,” author Jordan Roberts, MD, a clinical fellow of the Harvard Medical School Rheumatology Program, Boston, told CARRA attendees. TNF inhibitors are increasingly used as first-line treatment in JIA since growing evidence suggests better outcomes from early treatment with biologics. “Prior authorization requirements that delay TNF inhibitor initiation among children with JIA are common in clinical practice,” Dr. Roberts said, but little evidence exists to understand the extent of this problem and its causes.

The researchers therefore conducted a retrospective cohort study using a search of electronic health records from January 2018 to December 2019 to find all children at a single center with a new diagnosis of nonsystemic JIA. Then the authors pulled the timing of prior authorization requests, approvals, denials, and first TNF inhibitor dose from the medical notes. They also sought out any children who had been recommended a TNF inhibitor but never started one.

The total population included 54 children with an average age of 10 years, about two-thirds of whom had private insurance (63%). The group was predominantly White (63%), although 13% declined to provide race, and 7% were Hispanic. Most subtypes of disease were represented: oligoarticular persistent (28%), oligoarticular extended (2%), polyarticular rheumatoid factor-negative (15%), polyarticular rheumatoid factor-positive (15%), psoriatic arthritis (26%), enthesitis-related arthritis (12%), and undifferentiated arthritis (2%).

The 44 participants with private insurance had an average of two joints with active disease, while the 10 patients with public insurance had an average of four involved joints. Nearly all the patients (91%) had previously taken or were currently taking DMARDs when the prior authorization was submitted, and 61% had received NSAIDs.

All but one of the patients’ insurance plans required a prior authorization. The first prior authorization was denied for about one-third of the public insurance patients (30%) and a quarter of the private insurance patients. About 1 in 5 patients overall (22%) required a written appeal to override the denial, and 4% required peer-to-peer review. Meanwhile, 7% of patients began another medication because of the denial.

It took a median of 3 days for prior authorizations to be approved and a median of 24 days from the time the TNF inhibitor was recommended to the patient receiving the first dose. However, 22% of patients waited at least 2 weeks before the prior authorization was approved, and more than a quarter of the requests took over 30 days before the patient could begin the medication. In the public insurance group in particular, a quarter of children waited at least 19 days for approval and at least 44 days before starting the medication.

In fact, when the researchers looked at the difference in approval time between those who did and did not receive an initial denial, the difference was stark. Median approval time was 16 days when the prior authorization was denied, compared with a median of 5 days when the first prior authorization was approved. Similarly, time to initiation of the drug after recommendation was a median of 35 days for those whose prior authorization was first denied and 17 days for those with an initial approval.

The most common reason for an initial denial was the insurance company requiring a different TNF inhibitor than the one the rheumatologist wanted to prescribe. “These were all children whose rheumatologist has recommended either infliximab or etanercept that were required to use adalimumab instead,” Dr. Roberts said.

The other reasons for initial denial were similarly familiar ones:

• Required submission to another insurer
• Additional documentation required
• Lack of medical necessity
• Prescription was for an indication not approved by the Food and Drug Administration
• Age of patient
• Nonbiologic DMARD required
• NSAID required for step therapy

Only three children who were advised to begin a TNF inhibitor did not do so, including one who was lost to follow-up, one who had injection-related anxiety, and one who had safety concerns about the medication.

“Several children were required to use alternative TNF inhibitors than the one that was recommended due to restricted formularies, which may reduce shared decisionmaking between physicians and families and may not be the optimal clinical choice for an individual child,” Dr. Roberts said in her conclusion. Most children, however, were able to get approval for the TNF inhibitor originally requested, “suggesting that utilization management strategies present barriers to timely care despite appropriate specialty medication requests,” she said. “Therefore, it’s important for us to advocate for access to medications for children with JIA.”

Findings are not surprising

“I have these same experiences at my institution – often insurance will dictate clinical practice, and step therapy is the only option, causing a delay to initiation of TNFi even if we think, as the pediatric rheumatologist, that a child needs this medicine to be initiated on presentation to our clinic,” Nayimisha Balmuri, MD, assistant professor of pediatrics in the division of allergy, immunology, and rheumatology at the Johns Hopkins School of Medicine, Baltimore, told this news organization.

Dr. Balmuri, who was not involved in the study, noted that in her clinic at Johns Hopkins, it is hit or miss if an appeal to insurance companies or to the state (if it is Medicaid coverage) will be successful. “Unfortunately, [we are] mostly unsuccessful, and we have to try another DMARD for 8 to 12 weeks first before trying to get TNFi,” she said.

Dr. Balmuri called for bringing these issues to the attention of state and federal legislators. “It’s so important for us to continue to advocate for our patients at the state and national level! We are the advocates for our patients, and we are uniquely trained to know the best medications to initiate to help patients maximize their chance to reach remission of arthritis. Insurance companies need to hear our voices!”

Dr. Roberts reported grants from CARRA, the Lupus Foundation of America, and the National Institute of Allergy and Infectious Diseases during the conduct of the study.

A version of this article first appeared on Medscape.com.