Diversity in Medicine

Racial disparities in cancer care have been reduced by Medicaid expansion, suggest new nationwide data.

Across the United States, minority patients with cancer often have worse outcomes than White patients, with Black patients more likely to die sooner.

But new data suggest that these racial disparities are lessening. They come from a cross-sectional cohort study of patients with gastrointestinal cancers and show that the gap in mortality rates was reduced in Medicaid expansion states, compared with nonexpansion states.

The results were particularly notable for Black patients, for whom there was a consistent increase in receiving therapy (chemotherapy or surgery) and a decrease in mortality from stomach, colorectal, and pancreatic cancer, the investigators commented.

The study was highlighted at a press briefing held in advance of the annual meeting of the American Society of Clinical Oncology.

“The findings of this study provide a solid step for closing the gap, showing that the Medicaid expansion opportunity offered by the Affordable Care Act, which allows participating states to improve health care access for disadvantaged populations, results in better cancer outcomes and mitigation of racial disparities in cancer survival,” commented Julie Gralow, MD, chief medical officer and executive vice president of ASCO.

The study included 86,052 patients from the National Cancer Database who, from 2009 to 2019, were diagnosed with pancreatic cancer, colorectal cancer, or stomach cancer. Just over 22,000 patients (25.7%) were Black; the remainder 63,943 (74.3%) were White.

In Medicaid expansion states, there was a greater absolute reduction in 2-year mortality among Black patients with pancreatic cancer of –11.8%, compared with nonexpansion states, at –2.4%, a difference-in-difference (DID) of –9.4%. Additionally, there was an increase in treatment with chemotherapy for patients with stage III-IV pancreatic cancer (4.5% for Black patients and 3.2% for White), compared with patients in nonexpansion states (0.8% for Black patients and 0.4% for White; DID, 3.7% for Black patients and DID, 2.7% for White).

“We found similar results in colorectal cancer, but this effect is primarily observed among the stage IV patients,” commented lead author Naveen Manisundaram, MD, a research fellow at the University of Texas MD Anderson Cancer Center, Houston. “Black patients with advanced stage disease experienced a 12.6% reduction in mortality in expansion states.”

Among Black patients with stage IV colorectal cancer, there was an increase in rates of surgery in expansion states, compared with nonexpansion states (DID, 5.7%). However, there was no increase in treatment with chemotherapy (DID, 1%; P = .66).

Mortality rates for Black patients with stomach cancer also decreased. In expansion states, there was a –13% absolute decrease in mortality, compared with a –5.2% decrease in nonexpansion states.

The investigators noted that Medicaid coverage was a key component in access to care through the Affordable Care Act. About two-thirds (66.7%) of Black patients had Medicaid; 33.3% were uninsured. Coverage was similar among White patients; 64.1% had Medicaid and 35.9% were uninsured.

“Our study provides compelling data that show Medicaid expansion was associated with improvement in survival for both Black and White patients with gastrointestinal cancers. Additionally, it suggests that Medicaid expansion is one potential avenue to mitigate existing racial survival disparities among these patients,” Dr. Manisundaram concluded.

The study was funded by the National Institutes of Health. One coauthor reported an advisory role with Medicaroid. Dr. Gralow has had a consulting or advisory role with Genentech and Roche.

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

Racial disparities in cancer care have been reduced by Medicaid expansion, suggest new nationwide data.

Across the United States, minority patients with cancer often have worse outcomes than White patients, with Black patients more likely to die sooner.

But new data suggest that these racial disparities are lessening. They come from a cross-sectional cohort study of patients with gastrointestinal cancers and show that the gap in mortality rates was reduced in Medicaid expansion states, compared with nonexpansion states.

The results were particularly notable for Black patients, for whom there was a consistent increase in receiving therapy (chemotherapy or surgery) and a decrease in mortality from stomach, colorectal, and pancreatic cancer, the investigators commented.

The study was highlighted at a press briefing held in advance of the annual meeting of the American Society of Clinical Oncology.

“The findings of this study provide a solid step for closing the gap, showing that the Medicaid expansion opportunity offered by the Affordable Care Act, which allows participating states to improve health care access for disadvantaged populations, results in better cancer outcomes and mitigation of racial disparities in cancer survival,” commented Julie Gralow, MD, chief medical officer and executive vice president of ASCO.

The study included 86,052 patients from the National Cancer Database who, from 2009 to 2019, were diagnosed with pancreatic cancer, colorectal cancer, or stomach cancer. Just over 22,000 patients (25.7%) were Black; the remainder 63,943 (74.3%) were White.

In Medicaid expansion states, there was a greater absolute reduction in 2-year mortality among Black patients with pancreatic cancer of –11.8%, compared with nonexpansion states, at –2.4%, a difference-in-difference (DID) of –9.4%. Additionally, there was an increase in treatment with chemotherapy for patients with stage III-IV pancreatic cancer (4.5% for Black patients and 3.2% for White), compared with patients in nonexpansion states (0.8% for Black patients and 0.4% for White; DID, 3.7% for Black patients and DID, 2.7% for White).

“We found similar results in colorectal cancer, but this effect is primarily observed among the stage IV patients,” commented lead author Naveen Manisundaram, MD, a research fellow at the University of Texas MD Anderson Cancer Center, Houston. “Black patients with advanced stage disease experienced a 12.6% reduction in mortality in expansion states.”

Among Black patients with stage IV colorectal cancer, there was an increase in rates of surgery in expansion states, compared with nonexpansion states (DID, 5.7%). However, there was no increase in treatment with chemotherapy (DID, 1%; P = .66).

Mortality rates for Black patients with stomach cancer also decreased. In expansion states, there was a –13% absolute decrease in mortality, compared with a –5.2% decrease in nonexpansion states.

The investigators noted that Medicaid coverage was a key component in access to care through the Affordable Care Act. About two-thirds (66.7%) of Black patients had Medicaid; 33.3% were uninsured. Coverage was similar among White patients; 64.1% had Medicaid and 35.9% were uninsured.

“Our study provides compelling data that show Medicaid expansion was associated with improvement in survival for both Black and White patients with gastrointestinal cancers. Additionally, it suggests that Medicaid expansion is one potential avenue to mitigate existing racial survival disparities among these patients,” Dr. Manisundaram concluded.

The study was funded by the National Institutes of Health. One coauthor reported an advisory role with Medicaroid. Dr. Gralow has had a consulting or advisory role with Genentech and Roche.

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

Racial disparities in cancer care have been reduced by Medicaid expansion, suggest new nationwide data.

Across the United States, minority patients with cancer often have worse outcomes than White patients, with Black patients more likely to die sooner.

But new data suggest that these racial disparities are lessening. They come from a cross-sectional cohort study of patients with gastrointestinal cancers and show that the gap in mortality rates was reduced in Medicaid expansion states, compared with nonexpansion states.

The results were particularly notable for Black patients, for whom there was a consistent increase in receiving therapy (chemotherapy or surgery) and a decrease in mortality from stomach, colorectal, and pancreatic cancer, the investigators commented.

The study was highlighted at a press briefing held in advance of the annual meeting of the American Society of Clinical Oncology.

“The findings of this study provide a solid step for closing the gap, showing that the Medicaid expansion opportunity offered by the Affordable Care Act, which allows participating states to improve health care access for disadvantaged populations, results in better cancer outcomes and mitigation of racial disparities in cancer survival,” commented Julie Gralow, MD, chief medical officer and executive vice president of ASCO.

The study included 86,052 patients from the National Cancer Database who, from 2009 to 2019, were diagnosed with pancreatic cancer, colorectal cancer, or stomach cancer. Just over 22,000 patients (25.7%) were Black; the remainder 63,943 (74.3%) were White.

In Medicaid expansion states, there was a greater absolute reduction in 2-year mortality among Black patients with pancreatic cancer of –11.8%, compared with nonexpansion states, at –2.4%, a difference-in-difference (DID) of –9.4%. Additionally, there was an increase in treatment with chemotherapy for patients with stage III-IV pancreatic cancer (4.5% for Black patients and 3.2% for White), compared with patients in nonexpansion states (0.8% for Black patients and 0.4% for White; DID, 3.7% for Black patients and DID, 2.7% for White).

“We found similar results in colorectal cancer, but this effect is primarily observed among the stage IV patients,” commented lead author Naveen Manisundaram, MD, a research fellow at the University of Texas MD Anderson Cancer Center, Houston. “Black patients with advanced stage disease experienced a 12.6% reduction in mortality in expansion states.”

Among Black patients with stage IV colorectal cancer, there was an increase in rates of surgery in expansion states, compared with nonexpansion states (DID, 5.7%). However, there was no increase in treatment with chemotherapy (DID, 1%; P = .66).

Mortality rates for Black patients with stomach cancer also decreased. In expansion states, there was a –13% absolute decrease in mortality, compared with a –5.2% decrease in nonexpansion states.

The investigators noted that Medicaid coverage was a key component in access to care through the Affordable Care Act. About two-thirds (66.7%) of Black patients had Medicaid; 33.3% were uninsured. Coverage was similar among White patients; 64.1% had Medicaid and 35.9% were uninsured.

“Our study provides compelling data that show Medicaid expansion was associated with improvement in survival for both Black and White patients with gastrointestinal cancers. Additionally, it suggests that Medicaid expansion is one potential avenue to mitigate existing racial survival disparities among these patients,” Dr. Manisundaram concluded.

The study was funded by the National Institutes of Health. One coauthor reported an advisory role with Medicaroid. Dr. Gralow has had a consulting or advisory role with Genentech and Roche.

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

Survival from pediatric acute lymphoblastic leukemia (ALL) in a Mexican hospital improved significantly through a close cross-border collaboration with a nearby U.S. center that provided training and improved access.

A team from a hospital in San Diego combined a previously established training program from the World Health Organization with a new collaboration, which resulted in improvements in care standards and sustainability of care in a center in Tijuana, Mexico, just 23 miles away.

Implementation of the program in 2013 led to a significant 6% improvement in 5-year overall survival for children with ALL.

For patients at standard risk, 5-year overall survival increased from 73% to 100% after implementation of the program.

“This is really remarkable because this survival is the same as we have here in San Diego,” commented Paula Aristizabal, MD, MAS, a pediatric hematologist/oncologist at Rady Children’s Hospital, San Diego, at a press briefing before the annual meeting of the American Society of Clinical Oncology.

The findings show that “sustained improvements in cancer outcomes in low- and middle-income countries [LMICs] are feasible with innovative cross-border programs, particularly in borders that are shared” between a high- and low-income country, she commented. In other words, “it takes a village in both countries” to drive up standards.

Dr. Aristizabal also noted that the partnership will continue with a particularly focus on improving survival among patients with high-risk disease.

“We like to call it ‘twinning,’ because that means we are twins forever,” she said. “This is not a marriage that can be dissolved.”
 

‘Huge survival gap’

“The burden of childhood cancer has increased globally, but unfortunately, survival in low- and middle-income countries has not improved at the same level as in high-income countries,” Dr. Aristizabal commented.

This has resulted in a “huge survival gap” between high-income countries and the LMICs. ALL is now a leading cause of death among children in these countries, she commented.

“This study illustrates collaborative strategies that can be put into place today that could greatly improve outcomes for children with cancer globally,” commented Julie R. Gralow, MD, ASCO chief medical officer and executive vice president.

Speaking at the press conference, she added: “As I’ve heard Princess Dina Mired of Jordan say many times: ‘Your ZIP code should not determine if you survive cancer.’ ”

She said the differences in ALL survival between the United States and Mexico are an “example of children being so close in terms of proximity not having the same advantages.”

Also commenting, ASCO President Eric Winer, MD, from the Yale Cancer Center, New Haven, Conn., asked whether the proximity of the hospitals in San Diego and Tijuana “makes a difference, or do you think this is something that done ... at a distance?”

Dr. Aristizabal said that the proximity between the institutions “has been extremely helpful,” as they can go between hospitals in just 30 minutes.

However, “one of the things that we learned with COVID is that we can do a lot of things remotely,” she answered.

“Some of the projects that we started in Tijuana, through our collaboration with St. Jude Children’s Research Hospital, we have been able to implement in many other centers in Mexico,” she said.
 

Study details

Rady Children’s Hospital partnered with the public sector in Baja California, with the aim of improving outcomes in children’s cancer, she explained.

In 2008, the team collaborated with St. Jude Children’s Research Hospital, Memphis, to establish a training program in the Hospital General Tijuana in Tijuana that shared knowledge, technology, and organizational skills.

The team also consulted on clinical cases and set up education and research programs, all with the aim of building capacity and sustainability in Mexico.

“As the number of leukemia patients increased, we wanted to decrease depending on their international collaborators in the U.S. and ensure long-term sustainability,” Dr. Aristizabal explained.

This led in 2013 to the implementation of the WHO Framework for Action HSS training model, which has several components, including health service delivery.

Combined with the previously established model, the overall goals of the program were to improve health outcomes, systems efficiency, timely access to care, and social and financial risk protection.

Dr. Aristizabal said in an interview that this involved developing highly specific leukemia treatment guidelines, which have now gone through three iterations, as well as guidelines for supportive care.

Working with a local foundation, the team has also “focused on providing psychosocial support, nutritional support, a shelter for families that live 12-14 hours away from the pediatric cancer center, as well as food subsidies, trying to address financial toxicity and food insecurity in these families.”
 

Impact of the collaboration

To assess the impact of the WHO framework, the researchers conducted a study that involved 109 children with ALL who were treated at Hospital General Tijuana over the preimplementation phase in 2008-2012 and the postimplementation phase in 2013-2017.

The mean age of the patients was 7.04 years, and 50.4% were girls. The majority (67%) were classified as having high-risk disease.

Over the entire study period, the 5-year overall survival rate was 65%. Analysis revealed that between the pre- and postimplementation periods, 5-year overall survival increased from 59% to 65%, which Dr. Aristizabal described as “a significant improvement.”

Among high-risk patients, the improvement in 5-year survival between the pre- and postimplementation period went from 48% to 55%.

“This is an area for improvement,” Dr. Aristizabal said, “and we’re working on additional strategies to help improve survival for high-risk patients.

The study was funded by Rady Children’s Hospital, the Mexican Secretary of Health, and the Patronato Foundation. Dr. Aristizabal and coauthors reported no relevant financial relationships. Dr. Gralow reported relationships with Genentech and Roche. Dr. Winer reported relationships with Leap Therapeutics, Jounce Therapeutics, Carrick Therapeutics, and Genentech.

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

Survival from pediatric acute lymphoblastic leukemia (ALL) in a Mexican hospital improved significantly through a close cross-border collaboration with a nearby U.S. center that provided training and improved access.

A team from a hospital in San Diego combined a previously established training program from the World Health Organization with a new collaboration, which resulted in improvements in care standards and sustainability of care in a center in Tijuana, Mexico, just 23 miles away.

Implementation of the program in 2013 led to a significant 6% improvement in 5-year overall survival for children with ALL.

For patients at standard risk, 5-year overall survival increased from 73% to 100% after implementation of the program.

“This is really remarkable because this survival is the same as we have here in San Diego,” commented Paula Aristizabal, MD, MAS, a pediatric hematologist/oncologist at Rady Children’s Hospital, San Diego, at a press briefing before the annual meeting of the American Society of Clinical Oncology.

The findings show that “sustained improvements in cancer outcomes in low- and middle-income countries [LMICs] are feasible with innovative cross-border programs, particularly in borders that are shared” between a high- and low-income country, she commented. In other words, “it takes a village in both countries” to drive up standards.

Dr. Aristizabal also noted that the partnership will continue with a particularly focus on improving survival among patients with high-risk disease.

“We like to call it ‘twinning,’ because that means we are twins forever,” she said. “This is not a marriage that can be dissolved.”
 

‘Huge survival gap’

“The burden of childhood cancer has increased globally, but unfortunately, survival in low- and middle-income countries has not improved at the same level as in high-income countries,” Dr. Aristizabal commented.

This has resulted in a “huge survival gap” between high-income countries and the LMICs. ALL is now a leading cause of death among children in these countries, she commented.

“This study illustrates collaborative strategies that can be put into place today that could greatly improve outcomes for children with cancer globally,” commented Julie R. Gralow, MD, ASCO chief medical officer and executive vice president.

Speaking at the press conference, she added: “As I’ve heard Princess Dina Mired of Jordan say many times: ‘Your ZIP code should not determine if you survive cancer.’ ”

She said the differences in ALL survival between the United States and Mexico are an “example of children being so close in terms of proximity not having the same advantages.”

Also commenting, ASCO President Eric Winer, MD, from the Yale Cancer Center, New Haven, Conn., asked whether the proximity of the hospitals in San Diego and Tijuana “makes a difference, or do you think this is something that done ... at a distance?”

Dr. Aristizabal said that the proximity between the institutions “has been extremely helpful,” as they can go between hospitals in just 30 minutes.

However, “one of the things that we learned with COVID is that we can do a lot of things remotely,” she answered.

“Some of the projects that we started in Tijuana, through our collaboration with St. Jude Children’s Research Hospital, we have been able to implement in many other centers in Mexico,” she said.
 

Study details

Rady Children’s Hospital partnered with the public sector in Baja California, with the aim of improving outcomes in children’s cancer, she explained.

In 2008, the team collaborated with St. Jude Children’s Research Hospital, Memphis, to establish a training program in the Hospital General Tijuana in Tijuana that shared knowledge, technology, and organizational skills.

The team also consulted on clinical cases and set up education and research programs, all with the aim of building capacity and sustainability in Mexico.

“As the number of leukemia patients increased, we wanted to decrease depending on their international collaborators in the U.S. and ensure long-term sustainability,” Dr. Aristizabal explained.

This led in 2013 to the implementation of the WHO Framework for Action HSS training model, which has several components, including health service delivery.

Combined with the previously established model, the overall goals of the program were to improve health outcomes, systems efficiency, timely access to care, and social and financial risk protection.

Dr. Aristizabal said in an interview that this involved developing highly specific leukemia treatment guidelines, which have now gone through three iterations, as well as guidelines for supportive care.

Working with a local foundation, the team has also “focused on providing psychosocial support, nutritional support, a shelter for families that live 12-14 hours away from the pediatric cancer center, as well as food subsidies, trying to address financial toxicity and food insecurity in these families.”
 

Impact of the collaboration

To assess the impact of the WHO framework, the researchers conducted a study that involved 109 children with ALL who were treated at Hospital General Tijuana over the preimplementation phase in 2008-2012 and the postimplementation phase in 2013-2017.

The mean age of the patients was 7.04 years, and 50.4% were girls. The majority (67%) were classified as having high-risk disease.

Over the entire study period, the 5-year overall survival rate was 65%. Analysis revealed that between the pre- and postimplementation periods, 5-year overall survival increased from 59% to 65%, which Dr. Aristizabal described as “a significant improvement.”

Among high-risk patients, the improvement in 5-year survival between the pre- and postimplementation period went from 48% to 55%.

“This is an area for improvement,” Dr. Aristizabal said, “and we’re working on additional strategies to help improve survival for high-risk patients.

The study was funded by Rady Children’s Hospital, the Mexican Secretary of Health, and the Patronato Foundation. Dr. Aristizabal and coauthors reported no relevant financial relationships. Dr. Gralow reported relationships with Genentech and Roche. Dr. Winer reported relationships with Leap Therapeutics, Jounce Therapeutics, Carrick Therapeutics, and Genentech.

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

Survival from pediatric acute lymphoblastic leukemia (ALL) in a Mexican hospital improved significantly through a close cross-border collaboration with a nearby U.S. center that provided training and improved access.

A team from a hospital in San Diego combined a previously established training program from the World Health Organization with a new collaboration, which resulted in improvements in care standards and sustainability of care in a center in Tijuana, Mexico, just 23 miles away.

Implementation of the program in 2013 led to a significant 6% improvement in 5-year overall survival for children with ALL.

For patients at standard risk, 5-year overall survival increased from 73% to 100% after implementation of the program.

“This is really remarkable because this survival is the same as we have here in San Diego,” commented Paula Aristizabal, MD, MAS, a pediatric hematologist/oncologist at Rady Children’s Hospital, San Diego, at a press briefing before the annual meeting of the American Society of Clinical Oncology.

The findings show that “sustained improvements in cancer outcomes in low- and middle-income countries [LMICs] are feasible with innovative cross-border programs, particularly in borders that are shared” between a high- and low-income country, she commented. In other words, “it takes a village in both countries” to drive up standards.

Dr. Aristizabal also noted that the partnership will continue with a particularly focus on improving survival among patients with high-risk disease.

“We like to call it ‘twinning,’ because that means we are twins forever,” she said. “This is not a marriage that can be dissolved.”
 

‘Huge survival gap’

“The burden of childhood cancer has increased globally, but unfortunately, survival in low- and middle-income countries has not improved at the same level as in high-income countries,” Dr. Aristizabal commented.

This has resulted in a “huge survival gap” between high-income countries and the LMICs. ALL is now a leading cause of death among children in these countries, she commented.

“This study illustrates collaborative strategies that can be put into place today that could greatly improve outcomes for children with cancer globally,” commented Julie R. Gralow, MD, ASCO chief medical officer and executive vice president.

Speaking at the press conference, she added: “As I’ve heard Princess Dina Mired of Jordan say many times: ‘Your ZIP code should not determine if you survive cancer.’ ”

She said the differences in ALL survival between the United States and Mexico are an “example of children being so close in terms of proximity not having the same advantages.”

Also commenting, ASCO President Eric Winer, MD, from the Yale Cancer Center, New Haven, Conn., asked whether the proximity of the hospitals in San Diego and Tijuana “makes a difference, or do you think this is something that done ... at a distance?”

Dr. Aristizabal said that the proximity between the institutions “has been extremely helpful,” as they can go between hospitals in just 30 minutes.

However, “one of the things that we learned with COVID is that we can do a lot of things remotely,” she answered.

“Some of the projects that we started in Tijuana, through our collaboration with St. Jude Children’s Research Hospital, we have been able to implement in many other centers in Mexico,” she said.
 

Study details

Rady Children’s Hospital partnered with the public sector in Baja California, with the aim of improving outcomes in children’s cancer, she explained.

In 2008, the team collaborated with St. Jude Children’s Research Hospital, Memphis, to establish a training program in the Hospital General Tijuana in Tijuana that shared knowledge, technology, and organizational skills.

The team also consulted on clinical cases and set up education and research programs, all with the aim of building capacity and sustainability in Mexico.

“As the number of leukemia patients increased, we wanted to decrease depending on their international collaborators in the U.S. and ensure long-term sustainability,” Dr. Aristizabal explained.

This led in 2013 to the implementation of the WHO Framework for Action HSS training model, which has several components, including health service delivery.

Combined with the previously established model, the overall goals of the program were to improve health outcomes, systems efficiency, timely access to care, and social and financial risk protection.

Dr. Aristizabal said in an interview that this involved developing highly specific leukemia treatment guidelines, which have now gone through three iterations, as well as guidelines for supportive care.

Working with a local foundation, the team has also “focused on providing psychosocial support, nutritional support, a shelter for families that live 12-14 hours away from the pediatric cancer center, as well as food subsidies, trying to address financial toxicity and food insecurity in these families.”
 

Impact of the collaboration

To assess the impact of the WHO framework, the researchers conducted a study that involved 109 children with ALL who were treated at Hospital General Tijuana over the preimplementation phase in 2008-2012 and the postimplementation phase in 2013-2017.

The mean age of the patients was 7.04 years, and 50.4% were girls. The majority (67%) were classified as having high-risk disease.

Over the entire study period, the 5-year overall survival rate was 65%. Analysis revealed that between the pre- and postimplementation periods, 5-year overall survival increased from 59% to 65%, which Dr. Aristizabal described as “a significant improvement.”

Among high-risk patients, the improvement in 5-year survival between the pre- and postimplementation period went from 48% to 55%.

“This is an area for improvement,” Dr. Aristizabal said, “and we’re working on additional strategies to help improve survival for high-risk patients.

The study was funded by Rady Children’s Hospital, the Mexican Secretary of Health, and the Patronato Foundation. Dr. Aristizabal and coauthors reported no relevant financial relationships. Dr. Gralow reported relationships with Genentech and Roche. Dr. Winer reported relationships with Leap Therapeutics, Jounce Therapeutics, Carrick Therapeutics, and Genentech.

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

Paula Ngon, a 28-year-old public relations professional with Estée Lauder in New York, understands the value of good communication. After all, it’s her job to share information about her employer’s products with the world. Recently, she needed to tap her career training for another purpose: to capture the attention of a heedless oncologist.

Diagnosed with Hodgkin lymphoma in 2021, Ms. Ngon underwent port surgery to allow chemotherapy to be administered. Her right arm lost circulation and went numb, so she sought guidance from her blood cancer specialist. He dismissed her worries, saying that her tumors were pinching a nerve. She’d get better, he predicted, after more chemo.

credit to Paula Ngon

“I knew in my body that something was wrong,” Ms. Ngon recalled. When the oncologist continued to downplay her concerns, she and a fellow communications specialist sat down together in the hospital lobby to draft an email to her physician. “We were trying to articulate the urgency in an email that expresses that I’m not being dramatic. We had to do it in a way that didn’t insult his intelligence: ‘Respectfully, you’re the doctor, but I know something is wrong.’ ”

In essence, Ms. Ngon was trying to be diplomatic and not trigger her oncologist’s defenses, while still convincing him to take action. Her approach to getting her doctor’s attention worked. He referred Ms. Ngon to a radiologist, who discovered that she had blood clots in her arm. Ms. Ngon then landed in the ICU for a week, as clinicians tried to break up the clots.

“I was the perfect person for this to happen to, because of my job and education. But it makes me sad because I understand I was in a fortunate position, with a background in communication. Most people don’t have that,” Ms. Ngon said.

This and other negative experiences during her medical saga inspired Ms. Ngon to partner with the Lymphoma Research Foundation in order to spread the word about unique challenges facing patients like her: people of color.

Ms. Ngon, who is Black, said her goal as a patient advocate is to “empower communities of color to speak up for themselves and hold oncologists responsible for listening and understanding differences across cultures.” And she wants to take a stand against the “gaslighting” of patients.

African Americans with hematologic disease like Ms. Ngon face a higher risk of poor outcomes than Whites, even as they are less likely than Whites to develop certain blood cancers. The reasons for this disparity aren’t clear, but researchers suspect they’re related to factors such as poverty, lack of insurance, genetics, and limited access to high-quality care.

Some researchers have blamed another factor: racism. A 2022 study sought to explain why Black and Hispanic patients with acute myeloid leukemia in urban areas have higher mortality rates than Whites, “despite more favorable genetics and younger age” (hazard ratio, 1.59, 95% confidence interval, 1.15-2.22 and HR, 1.25; 95% CI, 0.88-1.79). The study authors determined that “structural racism” – which they measured by examining segregation and “disadvantage” in neighborhoods where patients lived – accounted for nearly all of the disparities.

Ms. Ngon said her experiences and her awareness about poorer outcomes in medicine for African Americans – such as higher death rates for Black women during pregnancy – affect how she interacts with clinicians. “I automatically assume a barrier between me and my doctors, and it’s their responsibility to dismantle it.”

Making an connection with a physician can make a huge difference, she said. “I walked into my primary care doctor’s office and saw that she was a Latino woman. My guard went down, and I could feel her care for me as a human being. Whether that was because she was also a woman of color or not, I don’t know. But I did feel more cared for.”

However, Ms. Ngon could not find a Black oncologist to care for her in New York City, and that’s no surprise.

Ethnic and gender diversity remains an immense challenge in the hematology/oncology field. According to the American Society of Clinical Oncology, only about a third of oncologists are women, and the percentages identifying themselves as Black/African American and Hispanic are just 2.3% and 5.8%, respectively.

These numbers don’t seem likely to budge much any time soon. An analysis of medical students in U.S. oncology training programs from 2015-2020 found that just 3.8% identified themselves as Black/African American and 5.1% as Hispanic/Latino versus 52.15% as White and 31% as Asian/Pacific Islander/Native Hawaiian.

Ms. Ngon encountered challenges on other fronts during her cancer care. When she needed a wig during chemotherapy, a list of insurer-approved shops didn’t include any that catered to African Americans. Essentially, she said, she was being told that she couldn’t “purchase a wig from a place that makes you feel comfortable and from a woman who understand your needs as a Black woman. It needs to be from these specific shops that really don’t cater to my community.”

She also found it difficult to find fellow patients who shared her unique challenges. “I remember when I was diagnosed, I was looking through the support groups on Facebook, trying to find someone Black to ask about whether braiding my hair might stop it from falling out.”

Now, Ms. Ngon is in remission. And she’s happy with her oncologist, who’s White. “He listened to me, and he promised me that I would have the most boring recovery process ever, after everything I’d experienced. That explains a lot of why I felt so comfortable with him.”

She hopes to use her partnership with the Lymphoma Research Foundation to be a resource for people of color and alert them to the support that’s available for them. “I would love to let them know how to advocate for themselves as patients, how to trust their bodies, how to push back if they feel like they’re not getting the care that they deserve.”

Ms. Ngon would also like to see more support for medical students of color. “I hope to exist in a world one day where it wouldn’t be so hard to find an oncologist who looks like me in a city as large as this one,” she said.

As for oncologists, she urged them to “go the extra mile and really, really listen to what patients are saying. It’s easier said than done because there are natural biases in this world, and it’s hard to overcome those obstacles. But to not be heard and have to push every time. It was just exhausting to do that on top of trying to beat cancer.”

Paula Ngon, a 28-year-old public relations professional with Estée Lauder in New York, understands the value of good communication. After all, it’s her job to share information about her employer’s products with the world. Recently, she needed to tap her career training for another purpose: to capture the attention of a heedless oncologist.

Diagnosed with Hodgkin lymphoma in 2021, Ms. Ngon underwent port surgery to allow chemotherapy to be administered. Her right arm lost circulation and went numb, so she sought guidance from her blood cancer specialist. He dismissed her worries, saying that her tumors were pinching a nerve. She’d get better, he predicted, after more chemo.

credit to Paula Ngon

“I knew in my body that something was wrong,” Ms. Ngon recalled. When the oncologist continued to downplay her concerns, she and a fellow communications specialist sat down together in the hospital lobby to draft an email to her physician. “We were trying to articulate the urgency in an email that expresses that I’m not being dramatic. We had to do it in a way that didn’t insult his intelligence: ‘Respectfully, you’re the doctor, but I know something is wrong.’ ”

In essence, Ms. Ngon was trying to be diplomatic and not trigger her oncologist’s defenses, while still convincing him to take action. Her approach to getting her doctor’s attention worked. He referred Ms. Ngon to a radiologist, who discovered that she had blood clots in her arm. Ms. Ngon then landed in the ICU for a week, as clinicians tried to break up the clots.

“I was the perfect person for this to happen to, because of my job and education. But it makes me sad because I understand I was in a fortunate position, with a background in communication. Most people don’t have that,” Ms. Ngon said.

This and other negative experiences during her medical saga inspired Ms. Ngon to partner with the Lymphoma Research Foundation in order to spread the word about unique challenges facing patients like her: people of color.

Ms. Ngon, who is Black, said her goal as a patient advocate is to “empower communities of color to speak up for themselves and hold oncologists responsible for listening and understanding differences across cultures.” And she wants to take a stand against the “gaslighting” of patients.

African Americans with hematologic disease like Ms. Ngon face a higher risk of poor outcomes than Whites, even as they are less likely than Whites to develop certain blood cancers. The reasons for this disparity aren’t clear, but researchers suspect they’re related to factors such as poverty, lack of insurance, genetics, and limited access to high-quality care.

Some researchers have blamed another factor: racism. A 2022 study sought to explain why Black and Hispanic patients with acute myeloid leukemia in urban areas have higher mortality rates than Whites, “despite more favorable genetics and younger age” (hazard ratio, 1.59, 95% confidence interval, 1.15-2.22 and HR, 1.25; 95% CI, 0.88-1.79). The study authors determined that “structural racism” – which they measured by examining segregation and “disadvantage” in neighborhoods where patients lived – accounted for nearly all of the disparities.

Ms. Ngon said her experiences and her awareness about poorer outcomes in medicine for African Americans – such as higher death rates for Black women during pregnancy – affect how she interacts with clinicians. “I automatically assume a barrier between me and my doctors, and it’s their responsibility to dismantle it.”

Making an connection with a physician can make a huge difference, she said. “I walked into my primary care doctor’s office and saw that she was a Latino woman. My guard went down, and I could feel her care for me as a human being. Whether that was because she was also a woman of color or not, I don’t know. But I did feel more cared for.”

However, Ms. Ngon could not find a Black oncologist to care for her in New York City, and that’s no surprise.

Ethnic and gender diversity remains an immense challenge in the hematology/oncology field. According to the American Society of Clinical Oncology, only about a third of oncologists are women, and the percentages identifying themselves as Black/African American and Hispanic are just 2.3% and 5.8%, respectively.

These numbers don’t seem likely to budge much any time soon. An analysis of medical students in U.S. oncology training programs from 2015-2020 found that just 3.8% identified themselves as Black/African American and 5.1% as Hispanic/Latino versus 52.15% as White and 31% as Asian/Pacific Islander/Native Hawaiian.

Ms. Ngon encountered challenges on other fronts during her cancer care. When she needed a wig during chemotherapy, a list of insurer-approved shops didn’t include any that catered to African Americans. Essentially, she said, she was being told that she couldn’t “purchase a wig from a place that makes you feel comfortable and from a woman who understand your needs as a Black woman. It needs to be from these specific shops that really don’t cater to my community.”

She also found it difficult to find fellow patients who shared her unique challenges. “I remember when I was diagnosed, I was looking through the support groups on Facebook, trying to find someone Black to ask about whether braiding my hair might stop it from falling out.”

Now, Ms. Ngon is in remission. And she’s happy with her oncologist, who’s White. “He listened to me, and he promised me that I would have the most boring recovery process ever, after everything I’d experienced. That explains a lot of why I felt so comfortable with him.”

She hopes to use her partnership with the Lymphoma Research Foundation to be a resource for people of color and alert them to the support that’s available for them. “I would love to let them know how to advocate for themselves as patients, how to trust their bodies, how to push back if they feel like they’re not getting the care that they deserve.”

Ms. Ngon would also like to see more support for medical students of color. “I hope to exist in a world one day where it wouldn’t be so hard to find an oncologist who looks like me in a city as large as this one,” she said.

As for oncologists, she urged them to “go the extra mile and really, really listen to what patients are saying. It’s easier said than done because there are natural biases in this world, and it’s hard to overcome those obstacles. But to not be heard and have to push every time. It was just exhausting to do that on top of trying to beat cancer.”

Paula Ngon, a 28-year-old public relations professional with Estée Lauder in New York, understands the value of good communication. After all, it’s her job to share information about her employer’s products with the world. Recently, she needed to tap her career training for another purpose: to capture the attention of a heedless oncologist.

Diagnosed with Hodgkin lymphoma in 2021, Ms. Ngon underwent port surgery to allow chemotherapy to be administered. Her right arm lost circulation and went numb, so she sought guidance from her blood cancer specialist. He dismissed her worries, saying that her tumors were pinching a nerve. She’d get better, he predicted, after more chemo.

credit to Paula Ngon

“I knew in my body that something was wrong,” Ms. Ngon recalled. When the oncologist continued to downplay her concerns, she and a fellow communications specialist sat down together in the hospital lobby to draft an email to her physician. “We were trying to articulate the urgency in an email that expresses that I’m not being dramatic. We had to do it in a way that didn’t insult his intelligence: ‘Respectfully, you’re the doctor, but I know something is wrong.’ ”

In essence, Ms. Ngon was trying to be diplomatic and not trigger her oncologist’s defenses, while still convincing him to take action. Her approach to getting her doctor’s attention worked. He referred Ms. Ngon to a radiologist, who discovered that she had blood clots in her arm. Ms. Ngon then landed in the ICU for a week, as clinicians tried to break up the clots.

“I was the perfect person for this to happen to, because of my job and education. But it makes me sad because I understand I was in a fortunate position, with a background in communication. Most people don’t have that,” Ms. Ngon said.

This and other negative experiences during her medical saga inspired Ms. Ngon to partner with the Lymphoma Research Foundation in order to spread the word about unique challenges facing patients like her: people of color.

Ms. Ngon, who is Black, said her goal as a patient advocate is to “empower communities of color to speak up for themselves and hold oncologists responsible for listening and understanding differences across cultures.” And she wants to take a stand against the “gaslighting” of patients.

African Americans with hematologic disease like Ms. Ngon face a higher risk of poor outcomes than Whites, even as they are less likely than Whites to develop certain blood cancers. The reasons for this disparity aren’t clear, but researchers suspect they’re related to factors such as poverty, lack of insurance, genetics, and limited access to high-quality care.

Some researchers have blamed another factor: racism. A 2022 study sought to explain why Black and Hispanic patients with acute myeloid leukemia in urban areas have higher mortality rates than Whites, “despite more favorable genetics and younger age” (hazard ratio, 1.59, 95% confidence interval, 1.15-2.22 and HR, 1.25; 95% CI, 0.88-1.79). The study authors determined that “structural racism” – which they measured by examining segregation and “disadvantage” in neighborhoods where patients lived – accounted for nearly all of the disparities.

Ms. Ngon said her experiences and her awareness about poorer outcomes in medicine for African Americans – such as higher death rates for Black women during pregnancy – affect how she interacts with clinicians. “I automatically assume a barrier between me and my doctors, and it’s their responsibility to dismantle it.”

Making an connection with a physician can make a huge difference, she said. “I walked into my primary care doctor’s office and saw that she was a Latino woman. My guard went down, and I could feel her care for me as a human being. Whether that was because she was also a woman of color or not, I don’t know. But I did feel more cared for.”

However, Ms. Ngon could not find a Black oncologist to care for her in New York City, and that’s no surprise.

Ethnic and gender diversity remains an immense challenge in the hematology/oncology field. According to the American Society of Clinical Oncology, only about a third of oncologists are women, and the percentages identifying themselves as Black/African American and Hispanic are just 2.3% and 5.8%, respectively.

These numbers don’t seem likely to budge much any time soon. An analysis of medical students in U.S. oncology training programs from 2015-2020 found that just 3.8% identified themselves as Black/African American and 5.1% as Hispanic/Latino versus 52.15% as White and 31% as Asian/Pacific Islander/Native Hawaiian.

Ms. Ngon encountered challenges on other fronts during her cancer care. When she needed a wig during chemotherapy, a list of insurer-approved shops didn’t include any that catered to African Americans. Essentially, she said, she was being told that she couldn’t “purchase a wig from a place that makes you feel comfortable and from a woman who understand your needs as a Black woman. It needs to be from these specific shops that really don’t cater to my community.”

She also found it difficult to find fellow patients who shared her unique challenges. “I remember when I was diagnosed, I was looking through the support groups on Facebook, trying to find someone Black to ask about whether braiding my hair might stop it from falling out.”

Now, Ms. Ngon is in remission. And she’s happy with her oncologist, who’s White. “He listened to me, and he promised me that I would have the most boring recovery process ever, after everything I’d experienced. That explains a lot of why I felt so comfortable with him.”

She hopes to use her partnership with the Lymphoma Research Foundation to be a resource for people of color and alert them to the support that’s available for them. “I would love to let them know how to advocate for themselves as patients, how to trust their bodies, how to push back if they feel like they’re not getting the care that they deserve.”

Ms. Ngon would also like to see more support for medical students of color. “I hope to exist in a world one day where it wouldn’t be so hard to find an oncologist who looks like me in a city as large as this one,” she said.

As for oncologists, she urged them to “go the extra mile and really, really listen to what patients are saying. It’s easier said than done because there are natural biases in this world, and it’s hard to overcome those obstacles. But to not be heard and have to push every time. It was just exhausting to do that on top of trying to beat cancer.”

Measurement error may be the culprit in underdiagnosing obstructive sleep apnea in Black patients, compared with White patients, based on data from nearly 2,000 individuals.

Data collected from ICU patients during the COVID-19 pandemic suggested that pulse oximetry devices used to measure oxygen saturation may be less accurate for patients with darker skin, according to Ali Azarbarzin, PhD, of Harvard Medical School, Boston.

“We wanted to examine the implications for obstructive sleep apnea,” which is often caused by a reduction in air flow, Dr. Azarbarzin said in an interview.

In a study presented at the American Thoracic Society’s international conference, Dr. Azarbarzin and colleagues examined data from 1,955 adults who were enrolled in the Multi-Ethnic Study of Atherosclerosis (MESA) Exam 5. The study participants underwent unattended 15-channel polysomnography that included a finger pulse oximeter. The mean age of the participants was 68.3 years, and 53.7% were women. A total of 12.1%, 23.7%, 27.7%, and 36.5% of the participants were Asian, Hispanic, Black, and White, respectively.

Apnea hypopnea index (AHI3P) was similar between Black and White patients, at approximately 19 events per hour. Black participants had higher wake SpO2, higher current smoking rates, and higher body mass index, compared with White participants, but these differences were not significant.

Severity of obstructive sleep apnea (OSA) was based on the hypoxic burden, which was defined as the total area under the respiratory curve. The total ventilatory burden was defined as the event-specific area under the ventilation signal and identified by amplitude changes in the nasal pressure signal. The researchers then calculated desaturation sensitivity (the primary outcome) as hypoxic burden divided by ventilatory burden.

In an unadjusted analysis, desaturation sensitivity was significantly lower in Black patients and Asian patients, compared with White patients (P < .001 and P < .02, respectively). After adjusting for age, sex, body mass index, and time spent in a supine position, desaturation sensitivity was lower only in Black patients, compared with White patients, and this difference persisted in both men and women.

The difference in desaturation sensitivity by race could be caused by differences in physiology or in measurement error, Dr. Azarbarzin told this news organization. If measurement error is the culprit, “we may be underestimating OSA severity in [Black people],” especially in Black women, he said.

However, more research is needed to understand the potential impact of both physiology and device accuracy on differences in oxygen saturation across ethnicities and to effectively identify and treat OSA in all patients, Dr. Azarbarzin said.

The MESA Study was supported by the National Institutes of Health and the National Institute on Aging. Data from MESA were obtained through support from the National Heart, Lung, and Blood Institute and the National Center for Advancing Translational Sciences. Dr. Azarbarzin disclosed funding from the National Institutes of Health, the American Health Association, and the American Academy of Sleep Medicine.

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

Measurement error may be the culprit in underdiagnosing obstructive sleep apnea in Black patients, compared with White patients, based on data from nearly 2,000 individuals.

Data collected from ICU patients during the COVID-19 pandemic suggested that pulse oximetry devices used to measure oxygen saturation may be less accurate for patients with darker skin, according to Ali Azarbarzin, PhD, of Harvard Medical School, Boston.

“We wanted to examine the implications for obstructive sleep apnea,” which is often caused by a reduction in air flow, Dr. Azarbarzin said in an interview.

In a study presented at the American Thoracic Society’s international conference, Dr. Azarbarzin and colleagues examined data from 1,955 adults who were enrolled in the Multi-Ethnic Study of Atherosclerosis (MESA) Exam 5. The study participants underwent unattended 15-channel polysomnography that included a finger pulse oximeter. The mean age of the participants was 68.3 years, and 53.7% were women. A total of 12.1%, 23.7%, 27.7%, and 36.5% of the participants were Asian, Hispanic, Black, and White, respectively.

Apnea hypopnea index (AHI3P) was similar between Black and White patients, at approximately 19 events per hour. Black participants had higher wake SpO2, higher current smoking rates, and higher body mass index, compared with White participants, but these differences were not significant.

Severity of obstructive sleep apnea (OSA) was based on the hypoxic burden, which was defined as the total area under the respiratory curve. The total ventilatory burden was defined as the event-specific area under the ventilation signal and identified by amplitude changes in the nasal pressure signal. The researchers then calculated desaturation sensitivity (the primary outcome) as hypoxic burden divided by ventilatory burden.

In an unadjusted analysis, desaturation sensitivity was significantly lower in Black patients and Asian patients, compared with White patients (P < .001 and P < .02, respectively). After adjusting for age, sex, body mass index, and time spent in a supine position, desaturation sensitivity was lower only in Black patients, compared with White patients, and this difference persisted in both men and women.

The difference in desaturation sensitivity by race could be caused by differences in physiology or in measurement error, Dr. Azarbarzin told this news organization. If measurement error is the culprit, “we may be underestimating OSA severity in [Black people],” especially in Black women, he said.

However, more research is needed to understand the potential impact of both physiology and device accuracy on differences in oxygen saturation across ethnicities and to effectively identify and treat OSA in all patients, Dr. Azarbarzin said.

The MESA Study was supported by the National Institutes of Health and the National Institute on Aging. Data from MESA were obtained through support from the National Heart, Lung, and Blood Institute and the National Center for Advancing Translational Sciences. Dr. Azarbarzin disclosed funding from the National Institutes of Health, the American Health Association, and the American Academy of Sleep Medicine.

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

Measurement error may be the culprit in underdiagnosing obstructive sleep apnea in Black patients, compared with White patients, based on data from nearly 2,000 individuals.

Data collected from ICU patients during the COVID-19 pandemic suggested that pulse oximetry devices used to measure oxygen saturation may be less accurate for patients with darker skin, according to Ali Azarbarzin, PhD, of Harvard Medical School, Boston.

“We wanted to examine the implications for obstructive sleep apnea,” which is often caused by a reduction in air flow, Dr. Azarbarzin said in an interview.

In a study presented at the American Thoracic Society’s international conference, Dr. Azarbarzin and colleagues examined data from 1,955 adults who were enrolled in the Multi-Ethnic Study of Atherosclerosis (MESA) Exam 5. The study participants underwent unattended 15-channel polysomnography that included a finger pulse oximeter. The mean age of the participants was 68.3 years, and 53.7% were women. A total of 12.1%, 23.7%, 27.7%, and 36.5% of the participants were Asian, Hispanic, Black, and White, respectively.

Apnea hypopnea index (AHI3P) was similar between Black and White patients, at approximately 19 events per hour. Black participants had higher wake SpO2, higher current smoking rates, and higher body mass index, compared with White participants, but these differences were not significant.

Severity of obstructive sleep apnea (OSA) was based on the hypoxic burden, which was defined as the total area under the respiratory curve. The total ventilatory burden was defined as the event-specific area under the ventilation signal and identified by amplitude changes in the nasal pressure signal. The researchers then calculated desaturation sensitivity (the primary outcome) as hypoxic burden divided by ventilatory burden.

In an unadjusted analysis, desaturation sensitivity was significantly lower in Black patients and Asian patients, compared with White patients (P < .001 and P < .02, respectively). After adjusting for age, sex, body mass index, and time spent in a supine position, desaturation sensitivity was lower only in Black patients, compared with White patients, and this difference persisted in both men and women.

The difference in desaturation sensitivity by race could be caused by differences in physiology or in measurement error, Dr. Azarbarzin told this news organization. If measurement error is the culprit, “we may be underestimating OSA severity in [Black people],” especially in Black women, he said.

However, more research is needed to understand the potential impact of both physiology and device accuracy on differences in oxygen saturation across ethnicities and to effectively identify and treat OSA in all patients, Dr. Azarbarzin said.

The MESA Study was supported by the National Institutes of Health and the National Institute on Aging. Data from MESA were obtained through support from the National Heart, Lung, and Blood Institute and the National Center for Advancing Translational Sciences. Dr. Azarbarzin disclosed funding from the National Institutes of Health, the American Health Association, and the American Academy of Sleep Medicine.

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

BALTIMORE – A novel partnership between a legal services program and a maternal health clinic is helping pregnant patients with issues such as housing or employment discrimination.

The Perinatal Legal Assistance and Well-being (P-LAW) program at Georgetown University, Washington, launched 2 years ago as a collaboration between GU’s Health Justice Alliance clinic and the Women’s and Infants Services division of nearby MedStar Washington Hospital Center, integrating attorneys into the health care team to offer no-cost legal aid for its diverse, urban population during the perinatal period. Since then, the effort has assisted more than 120 women.

“Our goal was to see how integrating a lawyer can help address some of those issues that, unfortunately, providers are not able to assist with because they go beyond the hospital or clinic walls,” said Roxana Richardson, JD, the project director and managing attorney for P-LAW, during a poster presentation at the annual clinical and scientific meeting of the American College of Obstetricians and Gynecologists. “Our initial findings showed that there are issues that patients were facing that needed an intervention from an attorney. We trained the providers and social workers to identify these issues so that we could intervene.”
 

Improving health by tackling legal barriers

Health-harming legal needs – social determinants of health that have a legal remedy – are drivers of poor health outcomes, particularly for Black women and children, Ms. Richardson said.

The program is one of few medical-legal partnerships specifically focused on the perinatal population. P-LAW is one component of a larger initiative at MedStar Health called DC Safe Babies Safe Moms. The initiative includes integrated mental health programming, treatment of health conditions that complicate pregnancy, assessments of social determinants of health, expanded support for lactation and nutrition, access to home visiting referrals, and extended postpartum follow-up. The work is supported through the A. James & Alice B. Clark Foundation.

Patients are evaluated for health-harming legal needs as part of a comprehensive social and behavioral health screening at their initial prenatal visit, 28-week appointment, and postpartum visit. Those who screen positive are contacted by a referral specialist on the health care team who confirms the patient has an active legal need and would like to be connected to the P-LAW team. The team then reaches out to conduct a legal intake and determine the appropriate course of action.

From March 2021 through February of this year, Ms. Richardson and others with the program have provided legal representation to 123 patients on 186 legal issues in areas such as public benefits, employment, and housing and family concerns. Services range from advising patients on steps they can take on their own (like reporting a housing condition issue to the Department of Buildings), to sending letters on patients’ behalf, to appearing in court. Most patients served were in their second and third trimesters of pregnancy. The majority were Black or African American, aged 20-34 years, and had incomes below 100% of the federal poverty level.

The most common legal issues were in the areas of public benefits (SNAP/food stamps, cash assistance), employment (parental leave, discrimination), housing (conditions, eviction), and family law (child support, domestic violence). Among the 186 issues, work has been completed on 106 concerns and 33 still have a case open; for 47, the client withdrew or ceased contact, Ms. Richardson reported.

Most times when obstetricians hear concerns like these, they wonder what to do, said Tamika Auguste, MD, chair of obstetrics and gynecology at MedStar Health. Having the P-LAW program as a resource is a huge help, she said. If patients express concerns, or if obstetricians uncover concerns during office visits, doctors can enter a referral directly in the electronic medical record.

Patients are “so relieved,” Dr. Auguste said in an interview, because they often wonder if their doctor can help. “Your doctor is only going to be able to help to a certain point. But to know they’re pregnant and they have this resource, and they’re going to get legal help, has been game-changing for so many patients.”
 

COVID ... or morning sickness?

In one rewarding case, Ms. Richardson said, a single mother of one child who was pregnant and experiencing hyperemesis explained that her employer would forbid her from working if she had any symptoms similar to COVID-19. The employer mistook her vomiting, nausea, and exhaustion as COVID symptoms and docked her pay. That started a cascade in which earning less meant she was facing eviction and car repossession – and, eventually, overdraft fees and withdrawals from her bank. She was so despondent she was thinking about self-harm, Ms. Richardson said.

With the aid of the P-LAW program, the woman had short-term disability approved within 72 hours, was referred to the hospital for inpatient mental health treatment, and received the care she needed. She ultimately delivered a healthy baby girl and found a new job.

Tiffany Moore Simas, MD, MPH, MEd, chair of the department of obstetrics and gynecology at the University of Massachusetts and UMass Memorial Health in Worcester, said she encounters similar concerns among her patients, with the vast majority having one or more issues with social determinants of health.

“I think it’s incredible, as we’re trying to address equity in perinatal health and maternal mortality and morbidity, to have a more holistic view of what health means, and all of the social determinants of health, and actually helping our patients address that in real time at their visits and connecting them,” said Dr. Simas, who also is professor of ob/gyn, pediatrics, psychiatry, and population and quantitative health sciences at UMass. “It has really opened my mind to the possibilities of things we need to explore and do differently.”

Ms. Richardson, Dr. Auguste, and Dr. Simas reported no relevant financial relationships.

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

BALTIMORE – A novel partnership between a legal services program and a maternal health clinic is helping pregnant patients with issues such as housing or employment discrimination.

The Perinatal Legal Assistance and Well-being (P-LAW) program at Georgetown University, Washington, launched 2 years ago as a collaboration between GU’s Health Justice Alliance clinic and the Women’s and Infants Services division of nearby MedStar Washington Hospital Center, integrating attorneys into the health care team to offer no-cost legal aid for its diverse, urban population during the perinatal period. Since then, the effort has assisted more than 120 women.

“Our goal was to see how integrating a lawyer can help address some of those issues that, unfortunately, providers are not able to assist with because they go beyond the hospital or clinic walls,” said Roxana Richardson, JD, the project director and managing attorney for P-LAW, during a poster presentation at the annual clinical and scientific meeting of the American College of Obstetricians and Gynecologists. “Our initial findings showed that there are issues that patients were facing that needed an intervention from an attorney. We trained the providers and social workers to identify these issues so that we could intervene.”
 

Improving health by tackling legal barriers

Health-harming legal needs – social determinants of health that have a legal remedy – are drivers of poor health outcomes, particularly for Black women and children, Ms. Richardson said.

The program is one of few medical-legal partnerships specifically focused on the perinatal population. P-LAW is one component of a larger initiative at MedStar Health called DC Safe Babies Safe Moms. The initiative includes integrated mental health programming, treatment of health conditions that complicate pregnancy, assessments of social determinants of health, expanded support for lactation and nutrition, access to home visiting referrals, and extended postpartum follow-up. The work is supported through the A. James & Alice B. Clark Foundation.

Patients are evaluated for health-harming legal needs as part of a comprehensive social and behavioral health screening at their initial prenatal visit, 28-week appointment, and postpartum visit. Those who screen positive are contacted by a referral specialist on the health care team who confirms the patient has an active legal need and would like to be connected to the P-LAW team. The team then reaches out to conduct a legal intake and determine the appropriate course of action.

From March 2021 through February of this year, Ms. Richardson and others with the program have provided legal representation to 123 patients on 186 legal issues in areas such as public benefits, employment, and housing and family concerns. Services range from advising patients on steps they can take on their own (like reporting a housing condition issue to the Department of Buildings), to sending letters on patients’ behalf, to appearing in court. Most patients served were in their second and third trimesters of pregnancy. The majority were Black or African American, aged 20-34 years, and had incomes below 100% of the federal poverty level.

The most common legal issues were in the areas of public benefits (SNAP/food stamps, cash assistance), employment (parental leave, discrimination), housing (conditions, eviction), and family law (child support, domestic violence). Among the 186 issues, work has been completed on 106 concerns and 33 still have a case open; for 47, the client withdrew or ceased contact, Ms. Richardson reported.

Most times when obstetricians hear concerns like these, they wonder what to do, said Tamika Auguste, MD, chair of obstetrics and gynecology at MedStar Health. Having the P-LAW program as a resource is a huge help, she said. If patients express concerns, or if obstetricians uncover concerns during office visits, doctors can enter a referral directly in the electronic medical record.

Patients are “so relieved,” Dr. Auguste said in an interview, because they often wonder if their doctor can help. “Your doctor is only going to be able to help to a certain point. But to know they’re pregnant and they have this resource, and they’re going to get legal help, has been game-changing for so many patients.”
 

COVID ... or morning sickness?

In one rewarding case, Ms. Richardson said, a single mother of one child who was pregnant and experiencing hyperemesis explained that her employer would forbid her from working if she had any symptoms similar to COVID-19. The employer mistook her vomiting, nausea, and exhaustion as COVID symptoms and docked her pay. That started a cascade in which earning less meant she was facing eviction and car repossession – and, eventually, overdraft fees and withdrawals from her bank. She was so despondent she was thinking about self-harm, Ms. Richardson said.

With the aid of the P-LAW program, the woman had short-term disability approved within 72 hours, was referred to the hospital for inpatient mental health treatment, and received the care she needed. She ultimately delivered a healthy baby girl and found a new job.

Tiffany Moore Simas, MD, MPH, MEd, chair of the department of obstetrics and gynecology at the University of Massachusetts and UMass Memorial Health in Worcester, said she encounters similar concerns among her patients, with the vast majority having one or more issues with social determinants of health.

“I think it’s incredible, as we’re trying to address equity in perinatal health and maternal mortality and morbidity, to have a more holistic view of what health means, and all of the social determinants of health, and actually helping our patients address that in real time at their visits and connecting them,” said Dr. Simas, who also is professor of ob/gyn, pediatrics, psychiatry, and population and quantitative health sciences at UMass. “It has really opened my mind to the possibilities of things we need to explore and do differently.”

Ms. Richardson, Dr. Auguste, and Dr. Simas reported no relevant financial relationships.

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

BALTIMORE – A novel partnership between a legal services program and a maternal health clinic is helping pregnant patients with issues such as housing or employment discrimination.

The Perinatal Legal Assistance and Well-being (P-LAW) program at Georgetown University, Washington, launched 2 years ago as a collaboration between GU’s Health Justice Alliance clinic and the Women’s and Infants Services division of nearby MedStar Washington Hospital Center, integrating attorneys into the health care team to offer no-cost legal aid for its diverse, urban population during the perinatal period. Since then, the effort has assisted more than 120 women.

“Our goal was to see how integrating a lawyer can help address some of those issues that, unfortunately, providers are not able to assist with because they go beyond the hospital or clinic walls,” said Roxana Richardson, JD, the project director and managing attorney for P-LAW, during a poster presentation at the annual clinical and scientific meeting of the American College of Obstetricians and Gynecologists. “Our initial findings showed that there are issues that patients were facing that needed an intervention from an attorney. We trained the providers and social workers to identify these issues so that we could intervene.”
 

Improving health by tackling legal barriers

Health-harming legal needs – social determinants of health that have a legal remedy – are drivers of poor health outcomes, particularly for Black women and children, Ms. Richardson said.

The program is one of few medical-legal partnerships specifically focused on the perinatal population. P-LAW is one component of a larger initiative at MedStar Health called DC Safe Babies Safe Moms. The initiative includes integrated mental health programming, treatment of health conditions that complicate pregnancy, assessments of social determinants of health, expanded support for lactation and nutrition, access to home visiting referrals, and extended postpartum follow-up. The work is supported through the A. James & Alice B. Clark Foundation.

Patients are evaluated for health-harming legal needs as part of a comprehensive social and behavioral health screening at their initial prenatal visit, 28-week appointment, and postpartum visit. Those who screen positive are contacted by a referral specialist on the health care team who confirms the patient has an active legal need and would like to be connected to the P-LAW team. The team then reaches out to conduct a legal intake and determine the appropriate course of action.

From March 2021 through February of this year, Ms. Richardson and others with the program have provided legal representation to 123 patients on 186 legal issues in areas such as public benefits, employment, and housing and family concerns. Services range from advising patients on steps they can take on their own (like reporting a housing condition issue to the Department of Buildings), to sending letters on patients’ behalf, to appearing in court. Most patients served were in their second and third trimesters of pregnancy. The majority were Black or African American, aged 20-34 years, and had incomes below 100% of the federal poverty level.

The most common legal issues were in the areas of public benefits (SNAP/food stamps, cash assistance), employment (parental leave, discrimination), housing (conditions, eviction), and family law (child support, domestic violence). Among the 186 issues, work has been completed on 106 concerns and 33 still have a case open; for 47, the client withdrew or ceased contact, Ms. Richardson reported.

Most times when obstetricians hear concerns like these, they wonder what to do, said Tamika Auguste, MD, chair of obstetrics and gynecology at MedStar Health. Having the P-LAW program as a resource is a huge help, she said. If patients express concerns, or if obstetricians uncover concerns during office visits, doctors can enter a referral directly in the electronic medical record.

Patients are “so relieved,” Dr. Auguste said in an interview, because they often wonder if their doctor can help. “Your doctor is only going to be able to help to a certain point. But to know they’re pregnant and they have this resource, and they’re going to get legal help, has been game-changing for so many patients.”
 

COVID ... or morning sickness?

In one rewarding case, Ms. Richardson said, a single mother of one child who was pregnant and experiencing hyperemesis explained that her employer would forbid her from working if she had any symptoms similar to COVID-19. The employer mistook her vomiting, nausea, and exhaustion as COVID symptoms and docked her pay. That started a cascade in which earning less meant she was facing eviction and car repossession – and, eventually, overdraft fees and withdrawals from her bank. She was so despondent she was thinking about self-harm, Ms. Richardson said.

With the aid of the P-LAW program, the woman had short-term disability approved within 72 hours, was referred to the hospital for inpatient mental health treatment, and received the care she needed. She ultimately delivered a healthy baby girl and found a new job.

Tiffany Moore Simas, MD, MPH, MEd, chair of the department of obstetrics and gynecology at the University of Massachusetts and UMass Memorial Health in Worcester, said she encounters similar concerns among her patients, with the vast majority having one or more issues with social determinants of health.

“I think it’s incredible, as we’re trying to address equity in perinatal health and maternal mortality and morbidity, to have a more holistic view of what health means, and all of the social determinants of health, and actually helping our patients address that in real time at their visits and connecting them,” said Dr. Simas, who also is professor of ob/gyn, pediatrics, psychiatry, and population and quantitative health sciences at UMass. “It has really opened my mind to the possibilities of things we need to explore and do differently.”

Ms. Richardson, Dr. Auguste, and Dr. Simas reported no relevant financial relationships.

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

A new study finds that racial disparities in male breast cancer are persisting in the United States.

From 2000 to 2019, Black men were diagnosed at later ages than White males (median ages, 69 and 63 years, respectively) and were more likely to die from the disease (22.4% vs. 16.8%, respectively). Male breast cancer (MBC) was more likely to kill Black men in rural vs. urban areas (hazard ratio = 1.4; 95% confidence interval, 1.0-2.1; P less than .05). Among White males, in contrast, there was no difference on that front, according to the research, which was presented in a poster (Abstract No. 87P) at the European Society for Medical Oncology (ESMO) Breast Cancer annual congress.

It’s not clear why the disparities exist, said lead author Lekha Yadukumar, MBBS, an internal medicine resident at the Wright Center for Graduate Medical Education in Scranton, Penn., in an interview.

“Several potential factors may contribute to the higher rate of breast cancer diagnosis in older [Black] men, including the pathology of the disease, limited awareness about breast cancer, and potential barriers to accessibility,” she said. “The increased mortality among [Black men] may be linked to variations in tumor pathology and molecular biology. Social factors may also potentially impact survival rates, including [having] limited access to health care in rural areas and inadequate social support.”

Male breast cancer is rare, accounting for less than 1% of all breast cancer cases in the United States, according to the Breast Cancer Research Foundation. An estimated 2,700 men are diagnosed each year, and about 530 will die. Previous research has suggested Black men have worse outcomes than White men, but the data covered earlier years than the new study.
 

Methods and results

Dr. Yadukumar and colleagues retrospectively analyzed statistics from the Surveillance, Epidemiology, and End Results database for patients diagnosed with primary male breast cancer from 2000 to 2019 (n = 8,373; Black men, 1,111 [13.26%]; White men, 6,817 [81.41%]).

Median income didn’t affect mortality, whereas men in both racial groups were less likely to die if they were married vs. single/divorced (hazard ratio = 0.6; P less than .05).

Other studies have shown that “[Black American] men diagnosed with breast cancer experience longer time intervals before receiving treatment, encounter more severe disease manifestations, and exhibit lower rates of survivorship,” Dr. Yadukumar said. “Despite these findings, there remains a scarcity of genetic studies aimed at comprehending the underlying causes of these disparities. Moreover, there is a dearth of research investigating other factors that may influence survival outcomes among men with breast cancer.”
 

Findings reflect the disparities in female breast cancer

In an interview, Duke University, Durham, N.C., oncologist Arif Kamal, MD, MBA, MHS, the chief patient officer at the American Cancer Society, said the study is impressive since the number of patients is large for a rare cancer and the population is diverse. Plus, the findings reflect the disparities in female breast cancer, he noted.

“We know that Black women’s mortality is worse vs. White women in breast cancer, and we believe that most of that has nothing to do with cancer screening,” said Dr. Kamal, who was not involved in the new study. “When the clock starts from diagnosis onwards, you start to see less introduction to clinical trials and standard care medications and more time to treatment, surgery, and radiation,” he said.

“You see similar disparities as related to mortality in Black vs. White men,” he noted.

The new findings about higher death rates for Black men, especially in rural areas, suggest that “distance matters, and race matters,” he said. In rural areas, it can be hard to access pathologists, radiologists, and surgeons with more experience with breast cancer, he said.

But, he noted, the study finds that income doesn’t appear to be a factor.

In the big picture, he said, the results suggest that when it comes to barriers to better outcomes, “things that are systemic don’t make exceptions because you are a man vs. a woman.”

No study funding was reported. The study authors and Dr. Kamal have no relevant financial disclosures.
 

A new study finds that racial disparities in male breast cancer are persisting in the United States.

From 2000 to 2019, Black men were diagnosed at later ages than White males (median ages, 69 and 63 years, respectively) and were more likely to die from the disease (22.4% vs. 16.8%, respectively). Male breast cancer (MBC) was more likely to kill Black men in rural vs. urban areas (hazard ratio = 1.4; 95% confidence interval, 1.0-2.1; P less than .05). Among White males, in contrast, there was no difference on that front, according to the research, which was presented in a poster (Abstract No. 87P) at the European Society for Medical Oncology (ESMO) Breast Cancer annual congress.

It’s not clear why the disparities exist, said lead author Lekha Yadukumar, MBBS, an internal medicine resident at the Wright Center for Graduate Medical Education in Scranton, Penn., in an interview.

“Several potential factors may contribute to the higher rate of breast cancer diagnosis in older [Black] men, including the pathology of the disease, limited awareness about breast cancer, and potential barriers to accessibility,” she said. “The increased mortality among [Black men] may be linked to variations in tumor pathology and molecular biology. Social factors may also potentially impact survival rates, including [having] limited access to health care in rural areas and inadequate social support.”

Male breast cancer is rare, accounting for less than 1% of all breast cancer cases in the United States, according to the Breast Cancer Research Foundation. An estimated 2,700 men are diagnosed each year, and about 530 will die. Previous research has suggested Black men have worse outcomes than White men, but the data covered earlier years than the new study.
 

Methods and results

Dr. Yadukumar and colleagues retrospectively analyzed statistics from the Surveillance, Epidemiology, and End Results database for patients diagnosed with primary male breast cancer from 2000 to 2019 (n = 8,373; Black men, 1,111 [13.26%]; White men, 6,817 [81.41%]).

Median income didn’t affect mortality, whereas men in both racial groups were less likely to die if they were married vs. single/divorced (hazard ratio = 0.6; P less than .05).

Other studies have shown that “[Black American] men diagnosed with breast cancer experience longer time intervals before receiving treatment, encounter more severe disease manifestations, and exhibit lower rates of survivorship,” Dr. Yadukumar said. “Despite these findings, there remains a scarcity of genetic studies aimed at comprehending the underlying causes of these disparities. Moreover, there is a dearth of research investigating other factors that may influence survival outcomes among men with breast cancer.”
 

Findings reflect the disparities in female breast cancer

In an interview, Duke University, Durham, N.C., oncologist Arif Kamal, MD, MBA, MHS, the chief patient officer at the American Cancer Society, said the study is impressive since the number of patients is large for a rare cancer and the population is diverse. Plus, the findings reflect the disparities in female breast cancer, he noted.

“We know that Black women’s mortality is worse vs. White women in breast cancer, and we believe that most of that has nothing to do with cancer screening,” said Dr. Kamal, who was not involved in the new study. “When the clock starts from diagnosis onwards, you start to see less introduction to clinical trials and standard care medications and more time to treatment, surgery, and radiation,” he said.

“You see similar disparities as related to mortality in Black vs. White men,” he noted.

The new findings about higher death rates for Black men, especially in rural areas, suggest that “distance matters, and race matters,” he said. In rural areas, it can be hard to access pathologists, radiologists, and surgeons with more experience with breast cancer, he said.

But, he noted, the study finds that income doesn’t appear to be a factor.

In the big picture, he said, the results suggest that when it comes to barriers to better outcomes, “things that are systemic don’t make exceptions because you are a man vs. a woman.”

No study funding was reported. The study authors and Dr. Kamal have no relevant financial disclosures.
 

A new study finds that racial disparities in male breast cancer are persisting in the United States.

From 2000 to 2019, Black men were diagnosed at later ages than White males (median ages, 69 and 63 years, respectively) and were more likely to die from the disease (22.4% vs. 16.8%, respectively). Male breast cancer (MBC) was more likely to kill Black men in rural vs. urban areas (hazard ratio = 1.4; 95% confidence interval, 1.0-2.1; P less than .05). Among White males, in contrast, there was no difference on that front, according to the research, which was presented in a poster (Abstract No. 87P) at the European Society for Medical Oncology (ESMO) Breast Cancer annual congress.

It’s not clear why the disparities exist, said lead author Lekha Yadukumar, MBBS, an internal medicine resident at the Wright Center for Graduate Medical Education in Scranton, Penn., in an interview.

“Several potential factors may contribute to the higher rate of breast cancer diagnosis in older [Black] men, including the pathology of the disease, limited awareness about breast cancer, and potential barriers to accessibility,” she said. “The increased mortality among [Black men] may be linked to variations in tumor pathology and molecular biology. Social factors may also potentially impact survival rates, including [having] limited access to health care in rural areas and inadequate social support.”

Male breast cancer is rare, accounting for less than 1% of all breast cancer cases in the United States, according to the Breast Cancer Research Foundation. An estimated 2,700 men are diagnosed each year, and about 530 will die. Previous research has suggested Black men have worse outcomes than White men, but the data covered earlier years than the new study.
 

Methods and results

Dr. Yadukumar and colleagues retrospectively analyzed statistics from the Surveillance, Epidemiology, and End Results database for patients diagnosed with primary male breast cancer from 2000 to 2019 (n = 8,373; Black men, 1,111 [13.26%]; White men, 6,817 [81.41%]).

Median income didn’t affect mortality, whereas men in both racial groups were less likely to die if they were married vs. single/divorced (hazard ratio = 0.6; P less than .05).

Other studies have shown that “[Black American] men diagnosed with breast cancer experience longer time intervals before receiving treatment, encounter more severe disease manifestations, and exhibit lower rates of survivorship,” Dr. Yadukumar said. “Despite these findings, there remains a scarcity of genetic studies aimed at comprehending the underlying causes of these disparities. Moreover, there is a dearth of research investigating other factors that may influence survival outcomes among men with breast cancer.”
 

Findings reflect the disparities in female breast cancer

In an interview, Duke University, Durham, N.C., oncologist Arif Kamal, MD, MBA, MHS, the chief patient officer at the American Cancer Society, said the study is impressive since the number of patients is large for a rare cancer and the population is diverse. Plus, the findings reflect the disparities in female breast cancer, he noted.

“We know that Black women’s mortality is worse vs. White women in breast cancer, and we believe that most of that has nothing to do with cancer screening,” said Dr. Kamal, who was not involved in the new study. “When the clock starts from diagnosis onwards, you start to see less introduction to clinical trials and standard care medications and more time to treatment, surgery, and radiation,” he said.

“You see similar disparities as related to mortality in Black vs. White men,” he noted.

The new findings about higher death rates for Black men, especially in rural areas, suggest that “distance matters, and race matters,” he said. In rural areas, it can be hard to access pathologists, radiologists, and surgeons with more experience with breast cancer, he said.

But, he noted, the study finds that income doesn’t appear to be a factor.

In the big picture, he said, the results suggest that when it comes to barriers to better outcomes, “things that are systemic don’t make exceptions because you are a man vs. a woman.”

No study funding was reported. The study authors and Dr. Kamal have no relevant financial disclosures.
 

SAN FRANCISCO – Although less likely than White patients to get a psychiatric diagnosis, Black patients were more likely to be physically restrained at three North Carolina emergency departments – especially when they were brought in by police, a new study finds.

In contrast, Hispanic/Latino patients were less likely to be restrained than both Black and White patients, researchers reported in a poster presented at the annual meeting of the American Psychiatric Association. The study authors also found that clinicians rarely turned to restraints, using them in just 2,712 of 882,390 ED visits (0.3%) over a 7-year period.

The study doesn’t examine why the disparities exist. But lead author Erika Chang-Sing, a medical student at Yale University, New Haven, Conn., said in an interview that it’s clear that racial bias is the cause of the differences in restraint rates among White, Black, and Hispanics/Latino patients. “We think that there are multiple contributing factors to the higher rates of restraint for Black patients brought to the hospital by police, and all of them are rooted in systemic racism,” she said, adding that “the lower odds of restraint in the Hispanic or Latino group are also rooted in systemic racism and inequity.”

According to Ms. Chang-Sing, researchers launched the study to gain insight into the use of the restraints in the Southeast and to see what’s happening in light of the recent publicizing of killings of Black people by police. Being taken to the hospital by police “might contribute both to the individual patient’s behavior and the health care provider’s assessment of risk in determining whether or not to apply restraints,” she said.

Other research has linked ethnicity to higher rates of restraint use. For example, a 2021 study of 32,054 cases of patients under mandatory psychiatric hold in 11 Massachusetts emergency rooms found that Black (adjusted odds ratio, 1.22) and Hispanic (aOR, 1.45) patients were more likely to be restrained than White patients.

For the new study, researchers retrospectively tracked 885,102 emergency room visits at three North Carolina emergency departments from 2015 to 2022, including 9,130 who were brought in by police and 2,712 who were physically restrained because of the perceived risk of violence. “Providers use restraints, or straps, to secure the patient’s wrists and ankles to the bed,” Ms. Chang-Sing said.

Among all patients, 52.5% were Black, but 66% of those who were restrained were Black. The numbers for White patients were 35.7% and 23.9%, respectively, and 5.7% and 3.2% for Hispanics/Latino patients. Black patients were less likely than White patients to get a psychiatric primary emergency department diagnosis (aOR, 0.67), but those in that category were more likely than their White counterparts to be restrained (aOR, 1.36).

The higher risk of restraint use in Black patients overall disappeared when researchers adjusted their statistics to account for the effects of sex, age, and type of insurance (aOR, 0.86). Ms. Chang-Sing said the study team is reanalyzing the data since they think insurance may not be a confounder.

Why might Hispanic/Latino ethnicity be protective against restraint use? “This may be due to language barriers, fear of law enforcement, and avoidance of the hospital in the first place,” Ms. Chang-Sing said.

Emergency physician Wendy Macias-Konstantopoulos, MD, MPH, MBA, of Harvard Medical School and Massachusetts General Hospital, both in Boston, coauthored the 2021 study on police restraints. In an interview, she said the new findings add to previous research by providing data about the role played by the police who bring patients to the ED. She added that there is no evidence that certain populations simply need more restraints.

What can be done to reduce disparities in restraint use? Mental health teams can make a difference by responding to mental health emergencies, Ms. Chang-Sing said. “These providers can be instrumental in communicating to patients that the intention is to care for them, not to punish them.”

Another strategy is to increase the number of clinics and crisis response centers, she said. Hospital-based crisis response teams can also be helpful, she said. “Because these teams are focused only on behavioral emergencies, they can be more thoughtful in avoiding the use of restraints.”

No study funding was reported. The study authors and Dr. Macias-Konstantopoulos have no disclosures.

SAN FRANCISCO – Although less likely than White patients to get a psychiatric diagnosis, Black patients were more likely to be physically restrained at three North Carolina emergency departments – especially when they were brought in by police, a new study finds.

In contrast, Hispanic/Latino patients were less likely to be restrained than both Black and White patients, researchers reported in a poster presented at the annual meeting of the American Psychiatric Association. The study authors also found that clinicians rarely turned to restraints, using them in just 2,712 of 882,390 ED visits (0.3%) over a 7-year period.

The study doesn’t examine why the disparities exist. But lead author Erika Chang-Sing, a medical student at Yale University, New Haven, Conn., said in an interview that it’s clear that racial bias is the cause of the differences in restraint rates among White, Black, and Hispanics/Latino patients. “We think that there are multiple contributing factors to the higher rates of restraint for Black patients brought to the hospital by police, and all of them are rooted in systemic racism,” she said, adding that “the lower odds of restraint in the Hispanic or Latino group are also rooted in systemic racism and inequity.”

According to Ms. Chang-Sing, researchers launched the study to gain insight into the use of the restraints in the Southeast and to see what’s happening in light of the recent publicizing of killings of Black people by police. Being taken to the hospital by police “might contribute both to the individual patient’s behavior and the health care provider’s assessment of risk in determining whether or not to apply restraints,” she said.

Other research has linked ethnicity to higher rates of restraint use. For example, a 2021 study of 32,054 cases of patients under mandatory psychiatric hold in 11 Massachusetts emergency rooms found that Black (adjusted odds ratio, 1.22) and Hispanic (aOR, 1.45) patients were more likely to be restrained than White patients.

For the new study, researchers retrospectively tracked 885,102 emergency room visits at three North Carolina emergency departments from 2015 to 2022, including 9,130 who were brought in by police and 2,712 who were physically restrained because of the perceived risk of violence. “Providers use restraints, or straps, to secure the patient’s wrists and ankles to the bed,” Ms. Chang-Sing said.

Among all patients, 52.5% were Black, but 66% of those who were restrained were Black. The numbers for White patients were 35.7% and 23.9%, respectively, and 5.7% and 3.2% for Hispanics/Latino patients. Black patients were less likely than White patients to get a psychiatric primary emergency department diagnosis (aOR, 0.67), but those in that category were more likely than their White counterparts to be restrained (aOR, 1.36).

The higher risk of restraint use in Black patients overall disappeared when researchers adjusted their statistics to account for the effects of sex, age, and type of insurance (aOR, 0.86). Ms. Chang-Sing said the study team is reanalyzing the data since they think insurance may not be a confounder.

Why might Hispanic/Latino ethnicity be protective against restraint use? “This may be due to language barriers, fear of law enforcement, and avoidance of the hospital in the first place,” Ms. Chang-Sing said.

Emergency physician Wendy Macias-Konstantopoulos, MD, MPH, MBA, of Harvard Medical School and Massachusetts General Hospital, both in Boston, coauthored the 2021 study on police restraints. In an interview, she said the new findings add to previous research by providing data about the role played by the police who bring patients to the ED. She added that there is no evidence that certain populations simply need more restraints.

What can be done to reduce disparities in restraint use? Mental health teams can make a difference by responding to mental health emergencies, Ms. Chang-Sing said. “These providers can be instrumental in communicating to patients that the intention is to care for them, not to punish them.”

Another strategy is to increase the number of clinics and crisis response centers, she said. Hospital-based crisis response teams can also be helpful, she said. “Because these teams are focused only on behavioral emergencies, they can be more thoughtful in avoiding the use of restraints.”

No study funding was reported. The study authors and Dr. Macias-Konstantopoulos have no disclosures.

SAN FRANCISCO – Although less likely than White patients to get a psychiatric diagnosis, Black patients were more likely to be physically restrained at three North Carolina emergency departments – especially when they were brought in by police, a new study finds.

In contrast, Hispanic/Latino patients were less likely to be restrained than both Black and White patients, researchers reported in a poster presented at the annual meeting of the American Psychiatric Association. The study authors also found that clinicians rarely turned to restraints, using them in just 2,712 of 882,390 ED visits (0.3%) over a 7-year period.

The study doesn’t examine why the disparities exist. But lead author Erika Chang-Sing, a medical student at Yale University, New Haven, Conn., said in an interview that it’s clear that racial bias is the cause of the differences in restraint rates among White, Black, and Hispanics/Latino patients. “We think that there are multiple contributing factors to the higher rates of restraint for Black patients brought to the hospital by police, and all of them are rooted in systemic racism,” she said, adding that “the lower odds of restraint in the Hispanic or Latino group are also rooted in systemic racism and inequity.”

According to Ms. Chang-Sing, researchers launched the study to gain insight into the use of the restraints in the Southeast and to see what’s happening in light of the recent publicizing of killings of Black people by police. Being taken to the hospital by police “might contribute both to the individual patient’s behavior and the health care provider’s assessment of risk in determining whether or not to apply restraints,” she said.

Other research has linked ethnicity to higher rates of restraint use. For example, a 2021 study of 32,054 cases of patients under mandatory psychiatric hold in 11 Massachusetts emergency rooms found that Black (adjusted odds ratio, 1.22) and Hispanic (aOR, 1.45) patients were more likely to be restrained than White patients.

For the new study, researchers retrospectively tracked 885,102 emergency room visits at three North Carolina emergency departments from 2015 to 2022, including 9,130 who were brought in by police and 2,712 who were physically restrained because of the perceived risk of violence. “Providers use restraints, or straps, to secure the patient’s wrists and ankles to the bed,” Ms. Chang-Sing said.

Among all patients, 52.5% were Black, but 66% of those who were restrained were Black. The numbers for White patients were 35.7% and 23.9%, respectively, and 5.7% and 3.2% for Hispanics/Latino patients. Black patients were less likely than White patients to get a psychiatric primary emergency department diagnosis (aOR, 0.67), but those in that category were more likely than their White counterparts to be restrained (aOR, 1.36).

The higher risk of restraint use in Black patients overall disappeared when researchers adjusted their statistics to account for the effects of sex, age, and type of insurance (aOR, 0.86). Ms. Chang-Sing said the study team is reanalyzing the data since they think insurance may not be a confounder.

Why might Hispanic/Latino ethnicity be protective against restraint use? “This may be due to language barriers, fear of law enforcement, and avoidance of the hospital in the first place,” Ms. Chang-Sing said.

Emergency physician Wendy Macias-Konstantopoulos, MD, MPH, MBA, of Harvard Medical School and Massachusetts General Hospital, both in Boston, coauthored the 2021 study on police restraints. In an interview, she said the new findings add to previous research by providing data about the role played by the police who bring patients to the ED. She added that there is no evidence that certain populations simply need more restraints.

What can be done to reduce disparities in restraint use? Mental health teams can make a difference by responding to mental health emergencies, Ms. Chang-Sing said. “These providers can be instrumental in communicating to patients that the intention is to care for them, not to punish them.”

Another strategy is to increase the number of clinics and crisis response centers, she said. Hospital-based crisis response teams can also be helpful, she said. “Because these teams are focused only on behavioral emergencies, they can be more thoughtful in avoiding the use of restraints.”

No study funding was reported. The study authors and Dr. Macias-Konstantopoulos have no disclosures.

Study 1 Overview (Park et al)

Objective: To compare rates of adverse events and 30-day readmission among patients with dementia who undergo percutaneous coronary intervention (PCI) with those without dementia.

Design: This cohort study used a national database of hospital readmissions developed by the Agency for Healthcare Research and Quality.

Setting and participants: Data from State Inpatient Databases were used to derive this national readmissions database representing 80% of hospitals from 28 states that contribute data. The study included all individuals aged 18 years and older who were identified to have had a PCI procedure in the years 2017 and 2018. International Classification of Diseases, Tenth Revision (ICD-10) codes were used to identify PCI procedures, including drug-eluting stent placement, bare-metal stent placement, and balloon angioplasty, performed in patients who presented with myocardial infarction and unstable angina and those with stable ischemic heart disease. Patients were stratified into those with or without dementia, also defined using ICD-10 codes. A total of 755,406 index hospitalizations were included; 2.3% of the patients had dementia.

Main outcome measures: The primary study outcome was 30-day all-cause readmission, with the cause classified as cardiovascular or noncardiovascular. Secondary outcome measures examined were delirium, in-hospital mortality, cardiac arrest, blood transfusion, acute kidney injury, fall in hospital, length of hospital stay, and other adverse outcomes. Location at discharge was also examined. Other covariates included in the analysis were age, sex, comorbidities, hospital characteristics, primary payer, and median income. For analysis, a propensity score matching algorithm was applied to match patients with and without dementia. Kaplan-Meier curves were used to examine 30-day readmission rates, and a Cox proportional hazards model was used to calculate hazard ratios (HR) for those with and without dementia. For secondary outcomes, logistic regression models were used to calculate odds ratios (OR) of outcomes between those with and without dementia.

Main results: The average age of those with dementia was 78.8 years vs 64.9 years in those without dementia. Women made up 42.8% of those with dementia and 31.3% of those without dementia. Those with dementia also had higher rates of comorbidities, such as heart failure, renal failure, and depression. After propensity score matching, 17,309 and 17,187 patients with and without dementia, respectively, were included. Covariates were balanced between the 2 groups after matching. For the primary outcome, patients with dementia were more likely to be readmitted at 30 days (HR, 1.11; 95% CI, 1.05-1.18; P < .01) when compared to those without dementia. For other adverse outcomes, delirium was significantly more likely to occur for those with dementia (OR, 4.37; 95% CI, 3.69-5.16; P < .01). Patients with dementia were also more likely to die in hospital (OR, 1.15; 95% CI, 1.01-1.30; P = .03), have cardiac arrest (OR, 1.19; 95% CI, 1.01-1.39; P = .04), receive a blood transfusion (OR, 1.17; 95% CI, 1.00-1.36; P = .05), experience acute kidney injury (OR, 1.30; 95% CI, 1.21-1.39; P < .01), and fall in hospital (OR, 2.51; 95% CI, 2.06-3.07; P < .01). Hospital length of stay was higher for those with dementia, with a mean difference of 1.43 days. For discharge location, patients with dementia were more likely to be sent to a skilled nursing facility (30.1% vs 12.2%) and less likely to be discharged home.

Conclusion: Patients with dementia are more likely to experience adverse events, including delirium, mortality, kidney injury, and falls after PCI, and are more likely to be readmitted to the hospital in 30 days compared to those without dementia.

Study 2 Overview (Gilmore-Bykovskyi et al)

Objective: To examine the association between race and 30-day readmissions in Black and non-Hispanic White Medicare beneficiaries with dementia.

Design: This was a retrospective cohort study that used 100% Medicare fee-for service claims data from all hospitalizations between January 1, 2014, and November 30, 2014, for all enrollees with a dementia diagnosis. The claims data were linked to the patient, hospital stay, and hospital factors. Patients with dementia were identified using a validated algorithm that requires an inpatient, skilled nursing facility, home health, or Part B institutional or noninstitutional claim with a qualifying diagnostic code during a 3-year period. Persons enrolled in a health maintenance organization plan were excluded.

Main outcome measures: The primary outcome examined in this study was 30-day all-cause readmission. Self-reported race and ethnic identity was a baseline covariate. Persons who self-reported Black or non-Hispanic White race were included in the study; other categories of race and ethnicity were excluded because of prior evidence suggesting low accuracy of these categories in Medicare claims data. Other covariates included neighborhood disadvantage, measured using the Area Deprivation Index (ADI), and rurality; hospital-level and hospital stay–level characteristics such as for-profit status and number of annual discharges; and individual demographic characteristics and comorbidities. The ADI is constructed using variables of poverty, education, housing, and employment and is represented as a percentile ranking of level of disadvantage. Unadjusted and adjusted analyses of 30-day hospital readmission were conducted. Models using various levels of adjustment were constructed to examine the contributions of the identified covariates to the estimated association between 30-day readmission and race.

Main results: A total of 1,523,142 index hospital stays among 945,481 beneficiaries were included; 215,815 episodes were among Black beneficiaries and 1,307,327 episodes were among non-Hispanic White beneficiaries. Mean age was 81.5 years, and approximately 61% of beneficiaries were female. Black beneficiaries were younger but had higher rates of dual Medicare/Medicaid eligibility and disability; they were also more likely to reside in disadvantaged neighborhoods. Black beneficiaries had a 30-day readmission rate of 24.1% compared with 18.5% in non-Hispanic White beneficiaries (unadjusted OR, 1.37; 95% CI, 1.35-1.39). The differences in outcomes persisted after adjusting for geographic factors, social factors, hospital characteristics, hospital stay factors, demographics, and comorbidities, suggesting that unmeasured underlying racial disparities not included in this model accounted for the differences. The effects of certain variables, such as neighborhood, differed by race; for example, the protective effect of living in a less disadvantaged neighborhood was observed among White beneficiaries but not Black beneficiaries.

Conclusion: Racial and geographic disparities in 30-day readmission rates were observed among Medicare beneficiaries with dementia. Protective effects associated with neighborhood advantage may confer different levels of benefit for people of different race.

Commentary

Adults living with dementia are at higher risk of adverse outcomes across settings. In the first study, by Park et al, among adults who underwent a cardiac procedure (PCI), those with dementia were more likely to experience adverse events compared to those without dementia. These outcomes include increased rates of 30-day readmissions, delirium, cardiac arrest, and falls. These findings are consistent with other studies that found a similar association among patients who underwent other cardiac procedures, such as transcatheter aortic valve replacement.¹ Because dementia is a strong predisposing factor for delirium, it is not surprising that delirium is observed across patients who underwent different procedures or hospitalization episodes.² Because of the potential hazards for inpatients with dementia, hospitals have developed risk-reduction programs, such as those that promote recognition of dementia, and management strategies that reduce the risk of delirium.³ Delirium prevention may also impact other adverse outcomes, such as falls, discharge to institutional care, and readmissions.

Racial disparities in care outcomes have been documented across settings, including hospital⁴ and hospice care settings.⁵ In study 2, by Gilmore-Bykovskyi et al, the findings of higher rates of hospital readmission among Black patients when compared to non-Hispanic White patients were not surprising. The central finding of this study is that even when accounting for various levels of factors, including hospital-level, hospital stay–level, individual (demographics, comorbidities), and neighborhood characteristics (disadvantage), the observed disparity diminished but persisted, suggesting that while these various levels of factors contributed to the observed disparity, other unmeasured factors also contributed. Another key finding is that the effect of the various factors examined in this study may affect different subgroups in different ways, suggesting underlying factors, and thus potential solutions to reduce disparities in care outcomes, could differ among subgroups.

Applications for Clinical Practice and System Implementation

These 2 studies add to the literature on factors that can affect 30-day hospital readmission rates in patients with dementia. These data could allow for more robust discussions of what to anticipate when adults with dementia undergo specific procedures, and also further build the case that improvements in care, such as delirium prevention programs, could offer benefits. The observation about racial and ethnic disparities in care outcomes among patients with dementia highlights the continued need to better understand the drivers of these disparities so that hospital systems and policy makers can consider and test possible solutions. Future studies should further disentangle the relationships among the various levels of factors and observed disparities in outcomes, especially for this vulnerable population of adults living with dementia.

Practice Points

• Clinicians should be aware of the additional risks for poor outcomes that dementia confers.
• Awareness of this increased risk will inform discussions of risks and benefits for older adults considered for procedures.

–William W. Hung, MD, MPH

Study 1 Overview (Park et al)

Objective: To compare rates of adverse events and 30-day readmission among patients with dementia who undergo percutaneous coronary intervention (PCI) with those without dementia.

Design: This cohort study used a national database of hospital readmissions developed by the Agency for Healthcare Research and Quality.

Setting and participants: Data from State Inpatient Databases were used to derive this national readmissions database representing 80% of hospitals from 28 states that contribute data. The study included all individuals aged 18 years and older who were identified to have had a PCI procedure in the years 2017 and 2018. International Classification of Diseases, Tenth Revision (ICD-10) codes were used to identify PCI procedures, including drug-eluting stent placement, bare-metal stent placement, and balloon angioplasty, performed in patients who presented with myocardial infarction and unstable angina and those with stable ischemic heart disease. Patients were stratified into those with or without dementia, also defined using ICD-10 codes. A total of 755,406 index hospitalizations were included; 2.3% of the patients had dementia.

Main outcome measures: The primary study outcome was 30-day all-cause readmission, with the cause classified as cardiovascular or noncardiovascular. Secondary outcome measures examined were delirium, in-hospital mortality, cardiac arrest, blood transfusion, acute kidney injury, fall in hospital, length of hospital stay, and other adverse outcomes. Location at discharge was also examined. Other covariates included in the analysis were age, sex, comorbidities, hospital characteristics, primary payer, and median income. For analysis, a propensity score matching algorithm was applied to match patients with and without dementia. Kaplan-Meier curves were used to examine 30-day readmission rates, and a Cox proportional hazards model was used to calculate hazard ratios (HR) for those with and without dementia. For secondary outcomes, logistic regression models were used to calculate odds ratios (OR) of outcomes between those with and without dementia.

Main results: The average age of those with dementia was 78.8 years vs 64.9 years in those without dementia. Women made up 42.8% of those with dementia and 31.3% of those without dementia. Those with dementia also had higher rates of comorbidities, such as heart failure, renal failure, and depression. After propensity score matching, 17,309 and 17,187 patients with and without dementia, respectively, were included. Covariates were balanced between the 2 groups after matching. For the primary outcome, patients with dementia were more likely to be readmitted at 30 days (HR, 1.11; 95% CI, 1.05-1.18; P < .01) when compared to those without dementia. For other adverse outcomes, delirium was significantly more likely to occur for those with dementia (OR, 4.37; 95% CI, 3.69-5.16; P < .01). Patients with dementia were also more likely to die in hospital (OR, 1.15; 95% CI, 1.01-1.30; P = .03), have cardiac arrest (OR, 1.19; 95% CI, 1.01-1.39; P = .04), receive a blood transfusion (OR, 1.17; 95% CI, 1.00-1.36; P = .05), experience acute kidney injury (OR, 1.30; 95% CI, 1.21-1.39; P < .01), and fall in hospital (OR, 2.51; 95% CI, 2.06-3.07; P < .01). Hospital length of stay was higher for those with dementia, with a mean difference of 1.43 days. For discharge location, patients with dementia were more likely to be sent to a skilled nursing facility (30.1% vs 12.2%) and less likely to be discharged home.

Conclusion: Patients with dementia are more likely to experience adverse events, including delirium, mortality, kidney injury, and falls after PCI, and are more likely to be readmitted to the hospital in 30 days compared to those without dementia.

Study 2 Overview (Gilmore-Bykovskyi et al)

Objective: To examine the association between race and 30-day readmissions in Black and non-Hispanic White Medicare beneficiaries with dementia.

Design: This was a retrospective cohort study that used 100% Medicare fee-for service claims data from all hospitalizations between January 1, 2014, and November 30, 2014, for all enrollees with a dementia diagnosis. The claims data were linked to the patient, hospital stay, and hospital factors. Patients with dementia were identified using a validated algorithm that requires an inpatient, skilled nursing facility, home health, or Part B institutional or noninstitutional claim with a qualifying diagnostic code during a 3-year period. Persons enrolled in a health maintenance organization plan were excluded.

Main outcome measures: The primary outcome examined in this study was 30-day all-cause readmission. Self-reported race and ethnic identity was a baseline covariate. Persons who self-reported Black or non-Hispanic White race were included in the study; other categories of race and ethnicity were excluded because of prior evidence suggesting low accuracy of these categories in Medicare claims data. Other covariates included neighborhood disadvantage, measured using the Area Deprivation Index (ADI), and rurality; hospital-level and hospital stay–level characteristics such as for-profit status and number of annual discharges; and individual demographic characteristics and comorbidities. The ADI is constructed using variables of poverty, education, housing, and employment and is represented as a percentile ranking of level of disadvantage. Unadjusted and adjusted analyses of 30-day hospital readmission were conducted. Models using various levels of adjustment were constructed to examine the contributions of the identified covariates to the estimated association between 30-day readmission and race.

Main results: A total of 1,523,142 index hospital stays among 945,481 beneficiaries were included; 215,815 episodes were among Black beneficiaries and 1,307,327 episodes were among non-Hispanic White beneficiaries. Mean age was 81.5 years, and approximately 61% of beneficiaries were female. Black beneficiaries were younger but had higher rates of dual Medicare/Medicaid eligibility and disability; they were also more likely to reside in disadvantaged neighborhoods. Black beneficiaries had a 30-day readmission rate of 24.1% compared with 18.5% in non-Hispanic White beneficiaries (unadjusted OR, 1.37; 95% CI, 1.35-1.39). The differences in outcomes persisted after adjusting for geographic factors, social factors, hospital characteristics, hospital stay factors, demographics, and comorbidities, suggesting that unmeasured underlying racial disparities not included in this model accounted for the differences. The effects of certain variables, such as neighborhood, differed by race; for example, the protective effect of living in a less disadvantaged neighborhood was observed among White beneficiaries but not Black beneficiaries.

Conclusion: Racial and geographic disparities in 30-day readmission rates were observed among Medicare beneficiaries with dementia. Protective effects associated with neighborhood advantage may confer different levels of benefit for people of different race.

Commentary

Adults living with dementia are at higher risk of adverse outcomes across settings. In the first study, by Park et al, among adults who underwent a cardiac procedure (PCI), those with dementia were more likely to experience adverse events compared to those without dementia. These outcomes include increased rates of 30-day readmissions, delirium, cardiac arrest, and falls. These findings are consistent with other studies that found a similar association among patients who underwent other cardiac procedures, such as transcatheter aortic valve replacement.¹ Because dementia is a strong predisposing factor for delirium, it is not surprising that delirium is observed across patients who underwent different procedures or hospitalization episodes.² Because of the potential hazards for inpatients with dementia, hospitals have developed risk-reduction programs, such as those that promote recognition of dementia, and management strategies that reduce the risk of delirium.³ Delirium prevention may also impact other adverse outcomes, such as falls, discharge to institutional care, and readmissions.

Racial disparities in care outcomes have been documented across settings, including hospital⁴ and hospice care settings.⁵ In study 2, by Gilmore-Bykovskyi et al, the findings of higher rates of hospital readmission among Black patients when compared to non-Hispanic White patients were not surprising. The central finding of this study is that even when accounting for various levels of factors, including hospital-level, hospital stay–level, individual (demographics, comorbidities), and neighborhood characteristics (disadvantage), the observed disparity diminished but persisted, suggesting that while these various levels of factors contributed to the observed disparity, other unmeasured factors also contributed. Another key finding is that the effect of the various factors examined in this study may affect different subgroups in different ways, suggesting underlying factors, and thus potential solutions to reduce disparities in care outcomes, could differ among subgroups.

Applications for Clinical Practice and System Implementation

These 2 studies add to the literature on factors that can affect 30-day hospital readmission rates in patients with dementia. These data could allow for more robust discussions of what to anticipate when adults with dementia undergo specific procedures, and also further build the case that improvements in care, such as delirium prevention programs, could offer benefits. The observation about racial and ethnic disparities in care outcomes among patients with dementia highlights the continued need to better understand the drivers of these disparities so that hospital systems and policy makers can consider and test possible solutions. Future studies should further disentangle the relationships among the various levels of factors and observed disparities in outcomes, especially for this vulnerable population of adults living with dementia.

Practice Points

• Clinicians should be aware of the additional risks for poor outcomes that dementia confers.
• Awareness of this increased risk will inform discussions of risks and benefits for older adults considered for procedures.

–William W. Hung, MD, MPH

Study 1 Overview (Park et al)

Objective: To compare rates of adverse events and 30-day readmission among patients with dementia who undergo percutaneous coronary intervention (PCI) with those without dementia.

Design: This cohort study used a national database of hospital readmissions developed by the Agency for Healthcare Research and Quality.

Setting and participants: Data from State Inpatient Databases were used to derive this national readmissions database representing 80% of hospitals from 28 states that contribute data. The study included all individuals aged 18 years and older who were identified to have had a PCI procedure in the years 2017 and 2018. International Classification of Diseases, Tenth Revision (ICD-10) codes were used to identify PCI procedures, including drug-eluting stent placement, bare-metal stent placement, and balloon angioplasty, performed in patients who presented with myocardial infarction and unstable angina and those with stable ischemic heart disease. Patients were stratified into those with or without dementia, also defined using ICD-10 codes. A total of 755,406 index hospitalizations were included; 2.3% of the patients had dementia.

Main outcome measures: The primary study outcome was 30-day all-cause readmission, with the cause classified as cardiovascular or noncardiovascular. Secondary outcome measures examined were delirium, in-hospital mortality, cardiac arrest, blood transfusion, acute kidney injury, fall in hospital, length of hospital stay, and other adverse outcomes. Location at discharge was also examined. Other covariates included in the analysis were age, sex, comorbidities, hospital characteristics, primary payer, and median income. For analysis, a propensity score matching algorithm was applied to match patients with and without dementia. Kaplan-Meier curves were used to examine 30-day readmission rates, and a Cox proportional hazards model was used to calculate hazard ratios (HR) for those with and without dementia. For secondary outcomes, logistic regression models were used to calculate odds ratios (OR) of outcomes between those with and without dementia.

Main results: The average age of those with dementia was 78.8 years vs 64.9 years in those without dementia. Women made up 42.8% of those with dementia and 31.3% of those without dementia. Those with dementia also had higher rates of comorbidities, such as heart failure, renal failure, and depression. After propensity score matching, 17,309 and 17,187 patients with and without dementia, respectively, were included. Covariates were balanced between the 2 groups after matching. For the primary outcome, patients with dementia were more likely to be readmitted at 30 days (HR, 1.11; 95% CI, 1.05-1.18; P < .01) when compared to those without dementia. For other adverse outcomes, delirium was significantly more likely to occur for those with dementia (OR, 4.37; 95% CI, 3.69-5.16; P < .01). Patients with dementia were also more likely to die in hospital (OR, 1.15; 95% CI, 1.01-1.30; P = .03), have cardiac arrest (OR, 1.19; 95% CI, 1.01-1.39; P = .04), receive a blood transfusion (OR, 1.17; 95% CI, 1.00-1.36; P = .05), experience acute kidney injury (OR, 1.30; 95% CI, 1.21-1.39; P < .01), and fall in hospital (OR, 2.51; 95% CI, 2.06-3.07; P < .01). Hospital length of stay was higher for those with dementia, with a mean difference of 1.43 days. For discharge location, patients with dementia were more likely to be sent to a skilled nursing facility (30.1% vs 12.2%) and less likely to be discharged home.

Conclusion: Patients with dementia are more likely to experience adverse events, including delirium, mortality, kidney injury, and falls after PCI, and are more likely to be readmitted to the hospital in 30 days compared to those without dementia.

Study 2 Overview (Gilmore-Bykovskyi et al)

Objective: To examine the association between race and 30-day readmissions in Black and non-Hispanic White Medicare beneficiaries with dementia.

Design: This was a retrospective cohort study that used 100% Medicare fee-for service claims data from all hospitalizations between January 1, 2014, and November 30, 2014, for all enrollees with a dementia diagnosis. The claims data were linked to the patient, hospital stay, and hospital factors. Patients with dementia were identified using a validated algorithm that requires an inpatient, skilled nursing facility, home health, or Part B institutional or noninstitutional claim with a qualifying diagnostic code during a 3-year period. Persons enrolled in a health maintenance organization plan were excluded.

Main outcome measures: The primary outcome examined in this study was 30-day all-cause readmission. Self-reported race and ethnic identity was a baseline covariate. Persons who self-reported Black or non-Hispanic White race were included in the study; other categories of race and ethnicity were excluded because of prior evidence suggesting low accuracy of these categories in Medicare claims data. Other covariates included neighborhood disadvantage, measured using the Area Deprivation Index (ADI), and rurality; hospital-level and hospital stay–level characteristics such as for-profit status and number of annual discharges; and individual demographic characteristics and comorbidities. The ADI is constructed using variables of poverty, education, housing, and employment and is represented as a percentile ranking of level of disadvantage. Unadjusted and adjusted analyses of 30-day hospital readmission were conducted. Models using various levels of adjustment were constructed to examine the contributions of the identified covariates to the estimated association between 30-day readmission and race.

Main results: A total of 1,523,142 index hospital stays among 945,481 beneficiaries were included; 215,815 episodes were among Black beneficiaries and 1,307,327 episodes were among non-Hispanic White beneficiaries. Mean age was 81.5 years, and approximately 61% of beneficiaries were female. Black beneficiaries were younger but had higher rates of dual Medicare/Medicaid eligibility and disability; they were also more likely to reside in disadvantaged neighborhoods. Black beneficiaries had a 30-day readmission rate of 24.1% compared with 18.5% in non-Hispanic White beneficiaries (unadjusted OR, 1.37; 95% CI, 1.35-1.39). The differences in outcomes persisted after adjusting for geographic factors, social factors, hospital characteristics, hospital stay factors, demographics, and comorbidities, suggesting that unmeasured underlying racial disparities not included in this model accounted for the differences. The effects of certain variables, such as neighborhood, differed by race; for example, the protective effect of living in a less disadvantaged neighborhood was observed among White beneficiaries but not Black beneficiaries.

Conclusion: Racial and geographic disparities in 30-day readmission rates were observed among Medicare beneficiaries with dementia. Protective effects associated with neighborhood advantage may confer different levels of benefit for people of different race.

Commentary

Adults living with dementia are at higher risk of adverse outcomes across settings. In the first study, by Park et al, among adults who underwent a cardiac procedure (PCI), those with dementia were more likely to experience adverse events compared to those without dementia. These outcomes include increased rates of 30-day readmissions, delirium, cardiac arrest, and falls. These findings are consistent with other studies that found a similar association among patients who underwent other cardiac procedures, such as transcatheter aortic valve replacement.¹ Because dementia is a strong predisposing factor for delirium, it is not surprising that delirium is observed across patients who underwent different procedures or hospitalization episodes.² Because of the potential hazards for inpatients with dementia, hospitals have developed risk-reduction programs, such as those that promote recognition of dementia, and management strategies that reduce the risk of delirium.³ Delirium prevention may also impact other adverse outcomes, such as falls, discharge to institutional care, and readmissions.

Racial disparities in care outcomes have been documented across settings, including hospital⁴ and hospice care settings.⁵ In study 2, by Gilmore-Bykovskyi et al, the findings of higher rates of hospital readmission among Black patients when compared to non-Hispanic White patients were not surprising. The central finding of this study is that even when accounting for various levels of factors, including hospital-level, hospital stay–level, individual (demographics, comorbidities), and neighborhood characteristics (disadvantage), the observed disparity diminished but persisted, suggesting that while these various levels of factors contributed to the observed disparity, other unmeasured factors also contributed. Another key finding is that the effect of the various factors examined in this study may affect different subgroups in different ways, suggesting underlying factors, and thus potential solutions to reduce disparities in care outcomes, could differ among subgroups.

Applications for Clinical Practice and System Implementation

These 2 studies add to the literature on factors that can affect 30-day hospital readmission rates in patients with dementia. These data could allow for more robust discussions of what to anticipate when adults with dementia undergo specific procedures, and also further build the case that improvements in care, such as delirium prevention programs, could offer benefits. The observation about racial and ethnic disparities in care outcomes among patients with dementia highlights the continued need to better understand the drivers of these disparities so that hospital systems and policy makers can consider and test possible solutions. Future studies should further disentangle the relationships among the various levels of factors and observed disparities in outcomes, especially for this vulnerable population of adults living with dementia.

Practice Points

• Clinicians should be aware of the additional risks for poor outcomes that dementia confers.
• Awareness of this increased risk will inform discussions of risks and benefits for older adults considered for procedures.

–William W. Hung, MD, MPH

The Diagnosis: PASH (Pyoderma Gangrenosum, Acne, Hidradenitis Suppurativa) Syndrome

Obtaining our patient’s history of hidradenitis suppurativa (HS), a hallmark sterile neutrophilic dermatosis, was key to making the correct diagnosis of PASH (pyoderma gangrenosum, acne, HS) syndrome. In our patient, the history of HS increased the consideration of pyoderma gangrenosum (PG) due to the persistent breast and leg wounds. Additionally, it was important to consider a diagnosis of PG in lesions that were not responding to broad-spectrum antimicrobial treatment. In our patient, the concurrent presentation of draining abscesses in the axillae (Figure, A) and inflammatory nodulocystic facial acne (Figure, B) were additional diagnostic clues that suggested the triad of PASH syndrome.

Although SAPHO (synovitis, acne, pustulosis, hyperostosis, osteitis) syndrome also can present with cutaneous features of acne and HS, the lack of bone and joint involvement in our patient made this diagnosis less likely. Calciphylaxis can present as ulcerations on the lower extremities, but it usually presents with a livedolike pattern with overlying black eschar and is unlikely in the absence of underlying metabolic or renal disease. PAPA (pyogenic arthritis, PG, acne) syndrome is characterized by recurrent joint involvement and lacks features of HS. Lastly, our patient was immunocompetent with no risk factors for mycobacterial infection.

PASH syndrome is a rare inherited syndrome, but its constituent inflammatory conditions are ubiquitous. They share a common underlying mechanism consisting of overactivation of the innate immune systems driven by increased production of the inflammatory cytokines IL-1, IL-17, and tumor necrosis factor α, resulting in sterile neutrophilic dermatoses.¹ The diagnosis is based on the clinical presentation, as laboratory investigations are nondiagnostic. Biopsies and cultures can be performed to rule out infectious etiologies. Additionally, PASH syndrome is considered part of a larger spectrum of syndromes including PAPA and PAPASH (pyogenic arthritis, acne, PG, HS) syndromes. The absence of pyogenic arthritis distinguishes PASH syndrome from PAPA and PAPASH syndromes.² Clinically, PASH syndrome and the related sterile neutrophilic dermatoses share the characteristic of pronounced cutaneous involvement that substantially alters the patient’s quality of life. Cigarette smoking is an exacerbating factor and has a well-established association with HS.³ Therefore, smoking cessation should be encouraged in these patients to avoid exacerbation of the disease process.

Maintaining adequate immunosuppression is key to managing the underlying disease processes. Classic immunosuppressive agents such as systemic glucocorticoids and methotrexate may fail to satisfactorily control the disease.⁴ Treatment options currently are somewhat limited and are aimed at targeting the inflammatory cytokines that propagate the disease. The most consistent responses have been observed with anti–tumor necrosis factor α antagonists such as adalimumab, infliximab, and etanercept.⁵ Additionally, there is varied response to anakinra, suggesting the importance of selectively targeting IL-1β.⁶ Unfortunately, misdiagnosis for an infectious etiology is common, and antibiotics and debridement are of limited use for the underlying pathophysiology of PASH syndrome. Importantly, biopsy and debridement often are discouraged due to the risk of pathergy.⁷

Our case demonstrates the importance of maintaining a high clinical suspicion for immune-mediated lesions that are refractory to antimicrobial agents. Additionally, prior history of multiple neutrophilic dermatoses should prompt consideration for the PASH/PAPA/PAPASH disease spectrum. Early and accurate identification of neutrophilic dermatoses such as PG and HS are crucial to initiating proper cytokine-targeting treatment and achieving disease remission.

The Diagnosis: PASH (Pyoderma Gangrenosum, Acne, Hidradenitis Suppurativa) Syndrome

Obtaining our patient’s history of hidradenitis suppurativa (HS), a hallmark sterile neutrophilic dermatosis, was key to making the correct diagnosis of PASH (pyoderma gangrenosum, acne, HS) syndrome. In our patient, the history of HS increased the consideration of pyoderma gangrenosum (PG) due to the persistent breast and leg wounds. Additionally, it was important to consider a diagnosis of PG in lesions that were not responding to broad-spectrum antimicrobial treatment. In our patient, the concurrent presentation of draining abscesses in the axillae (Figure, A) and inflammatory nodulocystic facial acne (Figure, B) were additional diagnostic clues that suggested the triad of PASH syndrome.

Although SAPHO (synovitis, acne, pustulosis, hyperostosis, osteitis) syndrome also can present with cutaneous features of acne and HS, the lack of bone and joint involvement in our patient made this diagnosis less likely. Calciphylaxis can present as ulcerations on the lower extremities, but it usually presents with a livedolike pattern with overlying black eschar and is unlikely in the absence of underlying metabolic or renal disease. PAPA (pyogenic arthritis, PG, acne) syndrome is characterized by recurrent joint involvement and lacks features of HS. Lastly, our patient was immunocompetent with no risk factors for mycobacterial infection.

PASH syndrome is a rare inherited syndrome, but its constituent inflammatory conditions are ubiquitous. They share a common underlying mechanism consisting of overactivation of the innate immune systems driven by increased production of the inflammatory cytokines IL-1, IL-17, and tumor necrosis factor α, resulting in sterile neutrophilic dermatoses.¹ The diagnosis is based on the clinical presentation, as laboratory investigations are nondiagnostic. Biopsies and cultures can be performed to rule out infectious etiologies. Additionally, PASH syndrome is considered part of a larger spectrum of syndromes including PAPA and PAPASH (pyogenic arthritis, acne, PG, HS) syndromes. The absence of pyogenic arthritis distinguishes PASH syndrome from PAPA and PAPASH syndromes.² Clinically, PASH syndrome and the related sterile neutrophilic dermatoses share the characteristic of pronounced cutaneous involvement that substantially alters the patient’s quality of life. Cigarette smoking is an exacerbating factor and has a well-established association with HS.³ Therefore, smoking cessation should be encouraged in these patients to avoid exacerbation of the disease process.

Maintaining adequate immunosuppression is key to managing the underlying disease processes. Classic immunosuppressive agents such as systemic glucocorticoids and methotrexate may fail to satisfactorily control the disease.⁴ Treatment options currently are somewhat limited and are aimed at targeting the inflammatory cytokines that propagate the disease. The most consistent responses have been observed with anti–tumor necrosis factor α antagonists such as adalimumab, infliximab, and etanercept.⁵ Additionally, there is varied response to anakinra, suggesting the importance of selectively targeting IL-1β.⁶ Unfortunately, misdiagnosis for an infectious etiology is common, and antibiotics and debridement are of limited use for the underlying pathophysiology of PASH syndrome. Importantly, biopsy and debridement often are discouraged due to the risk of pathergy.⁷

Our case demonstrates the importance of maintaining a high clinical suspicion for immune-mediated lesions that are refractory to antimicrobial agents. Additionally, prior history of multiple neutrophilic dermatoses should prompt consideration for the PASH/PAPA/PAPASH disease spectrum. Early and accurate identification of neutrophilic dermatoses such as PG and HS are crucial to initiating proper cytokine-targeting treatment and achieving disease remission.

The Diagnosis: PASH (Pyoderma Gangrenosum, Acne, Hidradenitis Suppurativa) Syndrome

Obtaining our patient’s history of hidradenitis suppurativa (HS), a hallmark sterile neutrophilic dermatosis, was key to making the correct diagnosis of PASH (pyoderma gangrenosum, acne, HS) syndrome. In our patient, the history of HS increased the consideration of pyoderma gangrenosum (PG) due to the persistent breast and leg wounds. Additionally, it was important to consider a diagnosis of PG in lesions that were not responding to broad-spectrum antimicrobial treatment. In our patient, the concurrent presentation of draining abscesses in the axillae (Figure, A) and inflammatory nodulocystic facial acne (Figure, B) were additional diagnostic clues that suggested the triad of PASH syndrome.

Although SAPHO (synovitis, acne, pustulosis, hyperostosis, osteitis) syndrome also can present with cutaneous features of acne and HS, the lack of bone and joint involvement in our patient made this diagnosis less likely. Calciphylaxis can present as ulcerations on the lower extremities, but it usually presents with a livedolike pattern with overlying black eschar and is unlikely in the absence of underlying metabolic or renal disease. PAPA (pyogenic arthritis, PG, acne) syndrome is characterized by recurrent joint involvement and lacks features of HS. Lastly, our patient was immunocompetent with no risk factors for mycobacterial infection.

PASH syndrome is a rare inherited syndrome, but its constituent inflammatory conditions are ubiquitous. They share a common underlying mechanism consisting of overactivation of the innate immune systems driven by increased production of the inflammatory cytokines IL-1, IL-17, and tumor necrosis factor α, resulting in sterile neutrophilic dermatoses.¹ The diagnosis is based on the clinical presentation, as laboratory investigations are nondiagnostic. Biopsies and cultures can be performed to rule out infectious etiologies. Additionally, PASH syndrome is considered part of a larger spectrum of syndromes including PAPA and PAPASH (pyogenic arthritis, acne, PG, HS) syndromes. The absence of pyogenic arthritis distinguishes PASH syndrome from PAPA and PAPASH syndromes.² Clinically, PASH syndrome and the related sterile neutrophilic dermatoses share the characteristic of pronounced cutaneous involvement that substantially alters the patient’s quality of life. Cigarette smoking is an exacerbating factor and has a well-established association with HS.³ Therefore, smoking cessation should be encouraged in these patients to avoid exacerbation of the disease process.

Maintaining adequate immunosuppression is key to managing the underlying disease processes. Classic immunosuppressive agents such as systemic glucocorticoids and methotrexate may fail to satisfactorily control the disease.⁴ Treatment options currently are somewhat limited and are aimed at targeting the inflammatory cytokines that propagate the disease. The most consistent responses have been observed with anti–tumor necrosis factor α antagonists such as adalimumab, infliximab, and etanercept.⁵ Additionally, there is varied response to anakinra, suggesting the importance of selectively targeting IL-1β.⁶ Unfortunately, misdiagnosis for an infectious etiology is common, and antibiotics and debridement are of limited use for the underlying pathophysiology of PASH syndrome. Importantly, biopsy and debridement often are discouraged due to the risk of pathergy.⁷

Our case demonstrates the importance of maintaining a high clinical suspicion for immune-mediated lesions that are refractory to antimicrobial agents. Additionally, prior history of multiple neutrophilic dermatoses should prompt consideration for the PASH/PAPA/PAPASH disease spectrum. Early and accurate identification of neutrophilic dermatoses such as PG and HS are crucial to initiating proper cytokine-targeting treatment and achieving disease remission.

The number of cancer survivors who report functional limitation has more than doubled in 20 years, according to a research letter published in JAMA Oncology.

Vishal Patel, BS, a student at the Dell Medical School at The University of Texas at Austin, and colleagues identified 51,258 cancer survivors from the National Health Interview Survey, representing a weighted population of approximately 178.8 million from 1999 to 2018.

Most survivors were women (60.2%) and were at least 65 years old (55.4%). In 1999, 3.6 million weighted survivors reported functional limitation. In 2018, the number increased to 8.2 million, a 2.25-fold increase.

The number of survivors who reported no limitations also increased, but not by as much. That group grew 1.34-fold during the study period.

For context, “the 70% prevalence of functional limitation among survivors in 2018 is nearly twice that of the general population,” the authors wrote.
 

Patients surveyed on function

Functional limitation was defined as “self-reported difficulty performing any of 12 routine physical or social activities without assistance.” Examples of the activities included difficulty sitting for more than 2 hours, difficulty participating in social activities or difficulty pushing or pulling an object the size of a living room chair.

Over the 2 decades analyzed, the adjusted prevalence of functional limitation was highest among survivors of pancreatic cancer (80.3%) and lung cancer (76.5%). Prevalence was lowest for survivors of melanoma (62.2%), breast (61.8%) and prostate (59.5%) cancers.
 

Not just a result of living longer

Mr. Patel told this publication that one assumption people might make when they read these results is that people are just living longer with cancer and losing functional ability accordingly.

“But, in fact, we found that the youngest [– those less than 65 years–] actually contributed to this trend more than the oldest people, which means it’s not just [happening], because people are getting older,” he said.

Hispanic and Black individuals had disproportionately higher increases in functional limitation; percentage point increases over the 2 decades were 19.5 for Black people, 25.1 for Hispanic people and 12.5 for White people. There may be a couple of reasons for that, Mr. Patel noted.

Those who are Black or Hispanic tend to have less access to cancer survivorship care for reasons including insurance status and historic health care inequities, he noted.

“The other potential reason is that they have had less access to cancer care historically. And if, 20 years ago Black and Hispanic individuals didn’t have access to some chemotherapies, and now they do, maybe it’s the increased access to care that’s causing these functional limitations. Because chemotherapy can sometimes be very toxic. It may be sort of a catch-up toxicity,” he said.
 

Quality of life beyond survivorship

Mr. Patel said the results seem to call for building on improved survival rates by tracking and improving function.

“It’s good to celebrate that there are more survivors. But now that we can keep people alive longer, maybe we can shift gears to improving their quality of life,” he said.

The more-than-doubling of functional limitations over 2 decades “is a very sobering trend,” he noted, while pointing out that the functional limitations applied to 8 million people in the United States – people whose needs are not being met.

There’s no sign of the trend stopping, he continued. “We saw no downward trend, only an upward trend.”

Increasingly, including functionality as an endpoint in cancer trials, in addition to improvements in mortality, is one place to start, he added.

“Our findings suggest an urgent need for care teams to understand and address function, for researchers to evaluate function as a core outcome in trials, and for health systems and policy makers to reimagine survivorship care, recognizing the burden of cancer and its treatment on physical, psychosocial, and cognitive function,” the authors wrote in their paper. Limitations of the study include the potential for recall bias, lack of cancer staging or treatment information, and the subjective perception of function.

A coauthor reported personal fees from Astellas, AstraZeneca, AAA, Blue Earth, Janssen, Lantheus, Myovant, Myriad Genetics, Novartis, Telix, and Sanofi, as well as grants from Pfizer and Bayer during the conduct of the study. No other disclosures were reported.

The number of cancer survivors who report functional limitation has more than doubled in 20 years, according to a research letter published in JAMA Oncology.

Vishal Patel, BS, a student at the Dell Medical School at The University of Texas at Austin, and colleagues identified 51,258 cancer survivors from the National Health Interview Survey, representing a weighted population of approximately 178.8 million from 1999 to 2018.

Most survivors were women (60.2%) and were at least 65 years old (55.4%). In 1999, 3.6 million weighted survivors reported functional limitation. In 2018, the number increased to 8.2 million, a 2.25-fold increase.

The number of survivors who reported no limitations also increased, but not by as much. That group grew 1.34-fold during the study period.

For context, “the 70% prevalence of functional limitation among survivors in 2018 is nearly twice that of the general population,” the authors wrote.
 

Patients surveyed on function

Functional limitation was defined as “self-reported difficulty performing any of 12 routine physical or social activities without assistance.” Examples of the activities included difficulty sitting for more than 2 hours, difficulty participating in social activities or difficulty pushing or pulling an object the size of a living room chair.

Over the 2 decades analyzed, the adjusted prevalence of functional limitation was highest among survivors of pancreatic cancer (80.3%) and lung cancer (76.5%). Prevalence was lowest for survivors of melanoma (62.2%), breast (61.8%) and prostate (59.5%) cancers.
 

Not just a result of living longer

Mr. Patel told this publication that one assumption people might make when they read these results is that people are just living longer with cancer and losing functional ability accordingly.

“But, in fact, we found that the youngest [– those less than 65 years–] actually contributed to this trend more than the oldest people, which means it’s not just [happening], because people are getting older,” he said.

Hispanic and Black individuals had disproportionately higher increases in functional limitation; percentage point increases over the 2 decades were 19.5 for Black people, 25.1 for Hispanic people and 12.5 for White people. There may be a couple of reasons for that, Mr. Patel noted.

Those who are Black or Hispanic tend to have less access to cancer survivorship care for reasons including insurance status and historic health care inequities, he noted.

“The other potential reason is that they have had less access to cancer care historically. And if, 20 years ago Black and Hispanic individuals didn’t have access to some chemotherapies, and now they do, maybe it’s the increased access to care that’s causing these functional limitations. Because chemotherapy can sometimes be very toxic. It may be sort of a catch-up toxicity,” he said.
 

Quality of life beyond survivorship

Mr. Patel said the results seem to call for building on improved survival rates by tracking and improving function.

“It’s good to celebrate that there are more survivors. But now that we can keep people alive longer, maybe we can shift gears to improving their quality of life,” he said.

The more-than-doubling of functional limitations over 2 decades “is a very sobering trend,” he noted, while pointing out that the functional limitations applied to 8 million people in the United States – people whose needs are not being met.

There’s no sign of the trend stopping, he continued. “We saw no downward trend, only an upward trend.”

Increasingly, including functionality as an endpoint in cancer trials, in addition to improvements in mortality, is one place to start, he added.

“Our findings suggest an urgent need for care teams to understand and address function, for researchers to evaluate function as a core outcome in trials, and for health systems and policy makers to reimagine survivorship care, recognizing the burden of cancer and its treatment on physical, psychosocial, and cognitive function,” the authors wrote in their paper. Limitations of the study include the potential for recall bias, lack of cancer staging or treatment information, and the subjective perception of function.

A coauthor reported personal fees from Astellas, AstraZeneca, AAA, Blue Earth, Janssen, Lantheus, Myovant, Myriad Genetics, Novartis, Telix, and Sanofi, as well as grants from Pfizer and Bayer during the conduct of the study. No other disclosures were reported.

The number of cancer survivors who report functional limitation has more than doubled in 20 years, according to a research letter published in JAMA Oncology.

Vishal Patel, BS, a student at the Dell Medical School at The University of Texas at Austin, and colleagues identified 51,258 cancer survivors from the National Health Interview Survey, representing a weighted population of approximately 178.8 million from 1999 to 2018.

Most survivors were women (60.2%) and were at least 65 years old (55.4%). In 1999, 3.6 million weighted survivors reported functional limitation. In 2018, the number increased to 8.2 million, a 2.25-fold increase.

The number of survivors who reported no limitations also increased, but not by as much. That group grew 1.34-fold during the study period.

For context, “the 70% prevalence of functional limitation among survivors in 2018 is nearly twice that of the general population,” the authors wrote.
 

Patients surveyed on function

Functional limitation was defined as “self-reported difficulty performing any of 12 routine physical or social activities without assistance.” Examples of the activities included difficulty sitting for more than 2 hours, difficulty participating in social activities or difficulty pushing or pulling an object the size of a living room chair.

Over the 2 decades analyzed, the adjusted prevalence of functional limitation was highest among survivors of pancreatic cancer (80.3%) and lung cancer (76.5%). Prevalence was lowest for survivors of melanoma (62.2%), breast (61.8%) and prostate (59.5%) cancers.
 

Not just a result of living longer

Mr. Patel told this publication that one assumption people might make when they read these results is that people are just living longer with cancer and losing functional ability accordingly.

“But, in fact, we found that the youngest [– those less than 65 years–] actually contributed to this trend more than the oldest people, which means it’s not just [happening], because people are getting older,” he said.

Hispanic and Black individuals had disproportionately higher increases in functional limitation; percentage point increases over the 2 decades were 19.5 for Black people, 25.1 for Hispanic people and 12.5 for White people. There may be a couple of reasons for that, Mr. Patel noted.

Those who are Black or Hispanic tend to have less access to cancer survivorship care for reasons including insurance status and historic health care inequities, he noted.

“The other potential reason is that they have had less access to cancer care historically. And if, 20 years ago Black and Hispanic individuals didn’t have access to some chemotherapies, and now they do, maybe it’s the increased access to care that’s causing these functional limitations. Because chemotherapy can sometimes be very toxic. It may be sort of a catch-up toxicity,” he said.
 

Quality of life beyond survivorship

Mr. Patel said the results seem to call for building on improved survival rates by tracking and improving function.

“It’s good to celebrate that there are more survivors. But now that we can keep people alive longer, maybe we can shift gears to improving their quality of life,” he said.

The more-than-doubling of functional limitations over 2 decades “is a very sobering trend,” he noted, while pointing out that the functional limitations applied to 8 million people in the United States – people whose needs are not being met.

There’s no sign of the trend stopping, he continued. “We saw no downward trend, only an upward trend.”

Increasingly, including functionality as an endpoint in cancer trials, in addition to improvements in mortality, is one place to start, he added.

“Our findings suggest an urgent need for care teams to understand and address function, for researchers to evaluate function as a core outcome in trials, and for health systems and policy makers to reimagine survivorship care, recognizing the burden of cancer and its treatment on physical, psychosocial, and cognitive function,” the authors wrote in their paper. Limitations of the study include the potential for recall bias, lack of cancer staging or treatment information, and the subjective perception of function.

A coauthor reported personal fees from Astellas, AstraZeneca, AAA, Blue Earth, Janssen, Lantheus, Myovant, Myriad Genetics, Novartis, Telix, and Sanofi, as well as grants from Pfizer and Bayer during the conduct of the study. No other disclosures were reported.