TBD Meeting (5358-21)

Cigarette smoking may be associated with a higher probability of developing colorectal neoplasia (CRN) among patients with inflammatory bowel disease (IBD), a finding that if confirmed could help to refine colorectal cancer surveillance guidelines. IBD patients undergo surveillance at specific time points of their disease with the aim to detect and potentially treat early CRN.

Terroa/iStock/Getty Images

But these procedures are costly and burdensome to patients, and some previous studies have revealed a relatively low utility for patients, according to Kimberley van der Sloot, MD, a PhD candidate at the University Medical Center Groningen (the Netherlands). She presented the research at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association. The study was also published in Clinical Gastroenterology and Hepatology.

“We aimed to explore the role of cigarette exposure in colorectal neoplasia risk in patients with IBD, and we aimed to improve the CRN risk stratification model that we are currently using for these surveillance guidelines,” Dr. van der Sloot said during her talk.

Commenters during the Q&A period noted that the population database used in the study did not include measures of inflammation, which is a known risk for CRN. One review found that smoking worsens inflammation in Crohn’s disease but improves it in ulcerative colitis.

“It certainly raises the issue that we’ve always said, which is that people should quit smoking for other health reasons, but it doesn’t necessarily answer the question definitively,” said David Rubin, MD, who moderated the session and is professor of medicine at the University of Chicago and chair of the congress’s organizing committee. He added that the association between smoking and CRN risk may nevertheless inform future management surveillance guidelines if it is confirmed.

The researchers analyzed data from the 1000IBD cohort, which is prospectively following IBD patients in the Netherlands. The study included 1,386 patients who had at least one colorectal biopsy. Compared to a general population CRN incidence of 2.4%, Crohn’s disease patients who were never smokers had an incidence of 4.7% versus 10.3% among former or current smokers. In ulcerative colitis, the incidence was 12.5% among never smokers and 17.9% among former or current smokers.

In Crohn’s disease, previous or current smokers had about a twofold increased risk (hazard ratio, 2.04; P = .044). Compared to never smokers, former smokers trended toward an increased risk (HR, 2.16; P = .051), and active smokers had a significantly increased risk (HR, 2.20; P = .044). Passive smoke exposure was also associated with greater risk, both in childhood (HR, 4.79; P = .003) and current (HR, 1.87; P = .024).

In ulcerative colitis, the only statistically significant association between smoke exposure and CRN risk was among former smokers (HR, 1.73; P = .032).

The researchers also looked at patients with a disease duration longer than 8 years and stratified patients according to low risk (left-side ulcerative colitis, <50% of colon affected in Crohn’s disease; n = 425), medium risk (postinflammatory polyposis present or extensive colitis; n = 467), and high risk (concordant primary sclerosing cholangitis or having a first-degree relative with colorectal cancer; n = 143). In Crohn’s disease, current smoking was associated with greater CRN incidence (P = .046), and former smoking trended in that direction but was nonsignificant (P = .068). Former smoking also trended toward a risk in ulcerative colitis (P = .068), but there was no sign of an association for current smoking (P = .883).

In Crohn’s disease, after adjustment for risk stratification, greater CRN risk was associated with passive smoke exposure both during childhood (P = .001) and at present (P = .003).

“We believe this is the first study to describe the important role of cigarette smoking in development of colorectal neoplasia in IBD patients in a large, prospective, cohort, and I think [it] has shown the importance of lifestyle and smoking particularly in IBD. This is one more example. Alongside that, we’ve shown that adding this risk factor can improve the current risk stratification that is used for surveillance guidelines, and might be of benefit in the development of future guidelines,” said Dr. van der Sloot.

Dr. van der Sloot and Dr. Rubin had no relevant financial disclosures.

This article was updated Mar. 11, 2021.

Cigarette smoking may be associated with a higher probability of developing colorectal neoplasia (CRN) among patients with inflammatory bowel disease (IBD), a finding that if confirmed could help to refine colorectal cancer surveillance guidelines. IBD patients undergo surveillance at specific time points of their disease with the aim to detect and potentially treat early CRN.

Terroa/iStock/Getty Images

But these procedures are costly and burdensome to patients, and some previous studies have revealed a relatively low utility for patients, according to Kimberley van der Sloot, MD, a PhD candidate at the University Medical Center Groningen (the Netherlands). She presented the research at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association. The study was also published in Clinical Gastroenterology and Hepatology.

“We aimed to explore the role of cigarette exposure in colorectal neoplasia risk in patients with IBD, and we aimed to improve the CRN risk stratification model that we are currently using for these surveillance guidelines,” Dr. van der Sloot said during her talk.

Commenters during the Q&A period noted that the population database used in the study did not include measures of inflammation, which is a known risk for CRN. One review found that smoking worsens inflammation in Crohn’s disease but improves it in ulcerative colitis.

“It certainly raises the issue that we’ve always said, which is that people should quit smoking for other health reasons, but it doesn’t necessarily answer the question definitively,” said David Rubin, MD, who moderated the session and is professor of medicine at the University of Chicago and chair of the congress’s organizing committee. He added that the association between smoking and CRN risk may nevertheless inform future management surveillance guidelines if it is confirmed.

The researchers analyzed data from the 1000IBD cohort, which is prospectively following IBD patients in the Netherlands. The study included 1,386 patients who had at least one colorectal biopsy. Compared to a general population CRN incidence of 2.4%, Crohn’s disease patients who were never smokers had an incidence of 4.7% versus 10.3% among former or current smokers. In ulcerative colitis, the incidence was 12.5% among never smokers and 17.9% among former or current smokers.

In Crohn’s disease, previous or current smokers had about a twofold increased risk (hazard ratio, 2.04; P = .044). Compared to never smokers, former smokers trended toward an increased risk (HR, 2.16; P = .051), and active smokers had a significantly increased risk (HR, 2.20; P = .044). Passive smoke exposure was also associated with greater risk, both in childhood (HR, 4.79; P = .003) and current (HR, 1.87; P = .024).

In ulcerative colitis, the only statistically significant association between smoke exposure and CRN risk was among former smokers (HR, 1.73; P = .032).

The researchers also looked at patients with a disease duration longer than 8 years and stratified patients according to low risk (left-side ulcerative colitis, <50% of colon affected in Crohn’s disease; n = 425), medium risk (postinflammatory polyposis present or extensive colitis; n = 467), and high risk (concordant primary sclerosing cholangitis or having a first-degree relative with colorectal cancer; n = 143). In Crohn’s disease, current smoking was associated with greater CRN incidence (P = .046), and former smoking trended in that direction but was nonsignificant (P = .068). Former smoking also trended toward a risk in ulcerative colitis (P = .068), but there was no sign of an association for current smoking (P = .883).

In Crohn’s disease, after adjustment for risk stratification, greater CRN risk was associated with passive smoke exposure both during childhood (P = .001) and at present (P = .003).

“We believe this is the first study to describe the important role of cigarette smoking in development of colorectal neoplasia in IBD patients in a large, prospective, cohort, and I think [it] has shown the importance of lifestyle and smoking particularly in IBD. This is one more example. Alongside that, we’ve shown that adding this risk factor can improve the current risk stratification that is used for surveillance guidelines, and might be of benefit in the development of future guidelines,” said Dr. van der Sloot.

Dr. van der Sloot and Dr. Rubin had no relevant financial disclosures.

This article was updated Mar. 11, 2021.

Cigarette smoking may be associated with a higher probability of developing colorectal neoplasia (CRN) among patients with inflammatory bowel disease (IBD), a finding that if confirmed could help to refine colorectal cancer surveillance guidelines. IBD patients undergo surveillance at specific time points of their disease with the aim to detect and potentially treat early CRN.

Terroa/iStock/Getty Images

But these procedures are costly and burdensome to patients, and some previous studies have revealed a relatively low utility for patients, according to Kimberley van der Sloot, MD, a PhD candidate at the University Medical Center Groningen (the Netherlands). She presented the research at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association. The study was also published in Clinical Gastroenterology and Hepatology.

“We aimed to explore the role of cigarette exposure in colorectal neoplasia risk in patients with IBD, and we aimed to improve the CRN risk stratification model that we are currently using for these surveillance guidelines,” Dr. van der Sloot said during her talk.

Commenters during the Q&A period noted that the population database used in the study did not include measures of inflammation, which is a known risk for CRN. One review found that smoking worsens inflammation in Crohn’s disease but improves it in ulcerative colitis.

“It certainly raises the issue that we’ve always said, which is that people should quit smoking for other health reasons, but it doesn’t necessarily answer the question definitively,” said David Rubin, MD, who moderated the session and is professor of medicine at the University of Chicago and chair of the congress’s organizing committee. He added that the association between smoking and CRN risk may nevertheless inform future management surveillance guidelines if it is confirmed.

The researchers analyzed data from the 1000IBD cohort, which is prospectively following IBD patients in the Netherlands. The study included 1,386 patients who had at least one colorectal biopsy. Compared to a general population CRN incidence of 2.4%, Crohn’s disease patients who were never smokers had an incidence of 4.7% versus 10.3% among former or current smokers. In ulcerative colitis, the incidence was 12.5% among never smokers and 17.9% among former or current smokers.

In Crohn’s disease, previous or current smokers had about a twofold increased risk (hazard ratio, 2.04; P = .044). Compared to never smokers, former smokers trended toward an increased risk (HR, 2.16; P = .051), and active smokers had a significantly increased risk (HR, 2.20; P = .044). Passive smoke exposure was also associated with greater risk, both in childhood (HR, 4.79; P = .003) and current (HR, 1.87; P = .024).

In ulcerative colitis, the only statistically significant association between smoke exposure and CRN risk was among former smokers (HR, 1.73; P = .032).

The researchers also looked at patients with a disease duration longer than 8 years and stratified patients according to low risk (left-side ulcerative colitis, <50% of colon affected in Crohn’s disease; n = 425), medium risk (postinflammatory polyposis present or extensive colitis; n = 467), and high risk (concordant primary sclerosing cholangitis or having a first-degree relative with colorectal cancer; n = 143). In Crohn’s disease, current smoking was associated with greater CRN incidence (P = .046), and former smoking trended in that direction but was nonsignificant (P = .068). Former smoking also trended toward a risk in ulcerative colitis (P = .068), but there was no sign of an association for current smoking (P = .883).

In Crohn’s disease, after adjustment for risk stratification, greater CRN risk was associated with passive smoke exposure both during childhood (P = .001) and at present (P = .003).

“We believe this is the first study to describe the important role of cigarette smoking in development of colorectal neoplasia in IBD patients in a large, prospective, cohort, and I think [it] has shown the importance of lifestyle and smoking particularly in IBD. This is one more example. Alongside that, we’ve shown that adding this risk factor can improve the current risk stratification that is used for surveillance guidelines, and might be of benefit in the development of future guidelines,” said Dr. van der Sloot.

Dr. van der Sloot and Dr. Rubin had no relevant financial disclosures.

This article was updated Mar. 11, 2021.

A large analysis of Medicare data from all 50 states suggests that vedolizumab may be just as effective as anti–tumor necrosis factor (anti-TNF) agents in controlling inflammatory bowel disease (IBD) in patients aged over 65 years, with fewer infectious disease hospitalizations.

The study was prompted by the fact that older adults are greatly underrepresented in clinical trials of approved IBD medications. There is a second peak in IBD diagnosis among people in their 50s and 60s, and IBD patients are living longer with more effective medications. So although a significant number of IBD patients are aged 65 years or older, that group encompasses less than 1% of adults in clinical trials, Bharati Kochar, MD, reported at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

“Therefore, we don’t know how well these medications work and how safe they are specifically in older adults,” said Dr. Kochar, a gastroenterologist at Massachusetts General Hospital and assistant professor of medicine at Harvard Medical School, both in Boston.

The data largely support what had been known mechanistically about vedolizumab. “It suggests that both drugs work well enough to prevent [IBD-related] hospitalizations, but clearly there was a benefit toward the safer medication, Entyvio [vedolizumab], in the infection-related hospitalizations. That’s not the only readout in infections, but it is an important readout because infections that get hospitalized are the ones that predict mortality and disability,” said Matthew Ciorba, MD, who attended the session. Dr. Ciorba is director of the IBD Center at Washington University in St. Louis and was not involved in the study.

“I think this study is reassuring to clinicians. It provides important clinical data that support what we know about the mechanisms of vedolizumab. The safety data we predicted is borne out in this large and well-done study,” said Dr. Ciorba.

A large analysis of Medicare data from all 50 states suggests that vedolizumab may be just as effective as anti–tumor necrosis factor (anti-TNF) agents in controlling inflammatory bowel disease (IBD) in patients aged over 65 years, with fewer infectious disease hospitalizations.

The study was prompted by the fact that older adults are greatly underrepresented in clinical trials of approved IBD medications. There is a second peak in IBD diagnosis among people in their 50s and 60s, and IBD patients are living longer with more effective medications. So although a significant number of IBD patients are aged 65 years or older, that group encompasses less than 1% of adults in clinical trials, Bharati Kochar, MD, reported at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

“Therefore, we don’t know how well these medications work and how safe they are specifically in older adults,” said Dr. Kochar, a gastroenterologist at Massachusetts General Hospital and assistant professor of medicine at Harvard Medical School, both in Boston.

The data largely support what had been known mechanistically about vedolizumab. “It suggests that both drugs work well enough to prevent [IBD-related] hospitalizations, but clearly there was a benefit toward the safer medication, Entyvio [vedolizumab], in the infection-related hospitalizations. That’s not the only readout in infections, but it is an important readout because infections that get hospitalized are the ones that predict mortality and disability,” said Matthew Ciorba, MD, who attended the session. Dr. Ciorba is director of the IBD Center at Washington University in St. Louis and was not involved in the study.

“I think this study is reassuring to clinicians. It provides important clinical data that support what we know about the mechanisms of vedolizumab. The safety data we predicted is borne out in this large and well-done study,” said Dr. Ciorba.

A large analysis of Medicare data from all 50 states suggests that vedolizumab may be just as effective as anti–tumor necrosis factor (anti-TNF) agents in controlling inflammatory bowel disease (IBD) in patients aged over 65 years, with fewer infectious disease hospitalizations.

The study was prompted by the fact that older adults are greatly underrepresented in clinical trials of approved IBD medications. There is a second peak in IBD diagnosis among people in their 50s and 60s, and IBD patients are living longer with more effective medications. So although a significant number of IBD patients are aged 65 years or older, that group encompasses less than 1% of adults in clinical trials, Bharati Kochar, MD, reported at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

“Therefore, we don’t know how well these medications work and how safe they are specifically in older adults,” said Dr. Kochar, a gastroenterologist at Massachusetts General Hospital and assistant professor of medicine at Harvard Medical School, both in Boston.

The data largely support what had been known mechanistically about vedolizumab. “It suggests that both drugs work well enough to prevent [IBD-related] hospitalizations, but clearly there was a benefit toward the safer medication, Entyvio [vedolizumab], in the infection-related hospitalizations. That’s not the only readout in infections, but it is an important readout because infections that get hospitalized are the ones that predict mortality and disability,” said Matthew Ciorba, MD, who attended the session. Dr. Ciorba is director of the IBD Center at Washington University in St. Louis and was not involved in the study.

“I think this study is reassuring to clinicians. It provides important clinical data that support what we know about the mechanisms of vedolizumab. The safety data we predicted is borne out in this large and well-done study,” said Dr. Ciorba.

Physicians treating patients with IBD typically focus on disease and symptom management along with quality of life measures, but the latter are not the final word on patient well-being. Social well-being is another outcome that can more accurately portray a patient’s satisfaction with their treatment.

That was the message delivered by Laurie Keefer, PhD, at a session on diet, stress, health literacy, and disparities in IBD treatment at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association. “When we talk about disease management, we’re talking about these outcomes of mucosal healing, remission, and lack of hospitalizations, but we don’t always talk about wellness,” said Dr. Keefer, director of psychobehavioral research in the department of gastroenterology at Icahn School of Medicine at Mount Sinai, New York.

Dr. Keefer advocated for incorporating measures that focus on the patient’s ability to feel fulfilled, pursue happiness, and contribute to the community. “Wellness is defined as a state of complete physical, mental, and social well-being. It’s a holistic definition, not merely the absence of those things,” she said during her talk.

Social determinants of health, such as income, inequality, health literacy, numeracy, financial stress, social connections, community, place of resonance, and housing coresidents, play important roles.

“Subjective well-being is a state in which an individual feels they are able to do work productively and creatively, have relationships, and contribute to their community. We want them to thrive. We want them to live well. We want them to reach their potential. There’s no reason you cannot reach your potential even though you’re living with IBD,” said Dr. Keefer.

Subjective well-being doesn’t replace quality of life assessment. “Absolutely, quality of life is an important metric, [but I want to] make a plug that maybe we should start to add subjective well-being into these outcome measures,” said Dr. Keefer.

The approach does away with specific measures of health, employment, financial security, or even living situation. “It takes away all of those things we just assume are part of being well. It measures it differently. It measures what makes us happy, divided by the degree of happiness we obtain,” said Dr. Keefer. She presented examples from a study her group is conducting that showed patients’ responses to what made them want to be well. “Some people want to be well to take care of their children or families or a parent, some people want to be well so they can go adventure skydiving, other people just want to be able to exercise and take care of their health. That’s what the target needs to be for wellness. In that sense, wellness is an achievement of best health possible in all domains, not just one. It’s a lifelong pursuit. It forces us to ask not just ‘Are my patient’s symptoms gone? Are they in clinical remission? Are they in histological remission? Are they in deep remission?’ but ‘Is my patient thriving? Are they meeting their potential? Are they getting what they want out of treatment? Are they happy?’ ”

Quality of life measures can provide some insight, but they are limited because they are anchored in physical symptoms, and they focus on a narrow, recent window, usually the past week. “You can imagine that as symptoms improve, those metrics kind of improve, and it looks like quality of life is great. But that’s not always the case, and we’re really missing an opportunity to go deeper. It’s also less sensitive when somebody is in remission, so it’s also very difficult to continue that proactive [approach] of thriving and living well when you’re already coming up positive on quality of life indices,” said Dr. Keefer.

Subjective well-being measures ignore physical symptoms, and focus instead on questions like the patient’s ability to work, socialize, and maintain relationships with family, and whether the patient feels able to contribute meaningfully to society. The measure is insensitive to factors such as inflammation, trauma, or changes to medication. As a result, measures can be used much less frequently – every 6 months, or even once a year.

Subjective well-being can also rely on the patient to define well-being, and that makes it more culturally sensitive. “It can allow for people to be well in whatever way they think they want to be well,” said Dr. Keefer.

There are various resources for measuring subjective well-being. The Organization for Economic Cooperation and Development has guidelines for measuring subjective well-being. The National Institutes of Health PROMIS includes useful measures of psychological well-being, positive affect, and general life satisfaction; they are available for free and include 6-8 items. Other useful measures include the Satisfaction with Life scale, the Positive and Negative Affect scale, and the Harmony in Life scale. “All of those have been well validated and used internationally as measures of well-being,” said Dr. Keefer.

Physicians can also address patients directly, asking them about how satisfied they are with their life. “You’re opening up that discussion to ask them not just, ‘How is your IBD and how is your IBD affecting your work?’ but ‘How is your life going?’ You’re proactively trying to help your patients thrive,” said Dr. Keefer.

Session moderators praised Dr. Keefer’s presentation as an appropriate wrap-up to talks that looked at stress, diet, economic disparities, health literacy, and numeracy.

“We capped it all with a discussion around what is well-being. We often talk about biologics or medicines or surgery when it comes to Crohn’s disease and ulcerative colitis, but what about holistic wellness? It’s all of this. It’s the medication piece, but it’s all of these other pillars involved in the process as well. I think looking at this from many different angles is very important so that patients can achieve the best quality of life possible,” said comoderator Tina Aswani Omprakash, a patient advocate who is pursuing a master’s degree in public health at Mount Sinai’s Icahn School of Medicine.

Physicians treating patients with IBD typically focus on disease and symptom management along with quality of life measures, but the latter are not the final word on patient well-being. Social well-being is another outcome that can more accurately portray a patient’s satisfaction with their treatment.

That was the message delivered by Laurie Keefer, PhD, at a session on diet, stress, health literacy, and disparities in IBD treatment at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association. “When we talk about disease management, we’re talking about these outcomes of mucosal healing, remission, and lack of hospitalizations, but we don’t always talk about wellness,” said Dr. Keefer, director of psychobehavioral research in the department of gastroenterology at Icahn School of Medicine at Mount Sinai, New York.

Dr. Keefer advocated for incorporating measures that focus on the patient’s ability to feel fulfilled, pursue happiness, and contribute to the community. “Wellness is defined as a state of complete physical, mental, and social well-being. It’s a holistic definition, not merely the absence of those things,” she said during her talk.

Social determinants of health, such as income, inequality, health literacy, numeracy, financial stress, social connections, community, place of resonance, and housing coresidents, play important roles.

“Subjective well-being is a state in which an individual feels they are able to do work productively and creatively, have relationships, and contribute to their community. We want them to thrive. We want them to live well. We want them to reach their potential. There’s no reason you cannot reach your potential even though you’re living with IBD,” said Dr. Keefer.

Subjective well-being doesn’t replace quality of life assessment. “Absolutely, quality of life is an important metric, [but I want to] make a plug that maybe we should start to add subjective well-being into these outcome measures,” said Dr. Keefer.

The approach does away with specific measures of health, employment, financial security, or even living situation. “It takes away all of those things we just assume are part of being well. It measures it differently. It measures what makes us happy, divided by the degree of happiness we obtain,” said Dr. Keefer. She presented examples from a study her group is conducting that showed patients’ responses to what made them want to be well. “Some people want to be well to take care of their children or families or a parent, some people want to be well so they can go adventure skydiving, other people just want to be able to exercise and take care of their health. That’s what the target needs to be for wellness. In that sense, wellness is an achievement of best health possible in all domains, not just one. It’s a lifelong pursuit. It forces us to ask not just ‘Are my patient’s symptoms gone? Are they in clinical remission? Are they in histological remission? Are they in deep remission?’ but ‘Is my patient thriving? Are they meeting their potential? Are they getting what they want out of treatment? Are they happy?’ ”

Quality of life measures can provide some insight, but they are limited because they are anchored in physical symptoms, and they focus on a narrow, recent window, usually the past week. “You can imagine that as symptoms improve, those metrics kind of improve, and it looks like quality of life is great. But that’s not always the case, and we’re really missing an opportunity to go deeper. It’s also less sensitive when somebody is in remission, so it’s also very difficult to continue that proactive [approach] of thriving and living well when you’re already coming up positive on quality of life indices,” said Dr. Keefer.

Subjective well-being measures ignore physical symptoms, and focus instead on questions like the patient’s ability to work, socialize, and maintain relationships with family, and whether the patient feels able to contribute meaningfully to society. The measure is insensitive to factors such as inflammation, trauma, or changes to medication. As a result, measures can be used much less frequently – every 6 months, or even once a year.

Subjective well-being can also rely on the patient to define well-being, and that makes it more culturally sensitive. “It can allow for people to be well in whatever way they think they want to be well,” said Dr. Keefer.

There are various resources for measuring subjective well-being. The Organization for Economic Cooperation and Development has guidelines for measuring subjective well-being. The National Institutes of Health PROMIS includes useful measures of psychological well-being, positive affect, and general life satisfaction; they are available for free and include 6-8 items. Other useful measures include the Satisfaction with Life scale, the Positive and Negative Affect scale, and the Harmony in Life scale. “All of those have been well validated and used internationally as measures of well-being,” said Dr. Keefer.

Physicians can also address patients directly, asking them about how satisfied they are with their life. “You’re opening up that discussion to ask them not just, ‘How is your IBD and how is your IBD affecting your work?’ but ‘How is your life going?’ You’re proactively trying to help your patients thrive,” said Dr. Keefer.

Session moderators praised Dr. Keefer’s presentation as an appropriate wrap-up to talks that looked at stress, diet, economic disparities, health literacy, and numeracy.

“We capped it all with a discussion around what is well-being. We often talk about biologics or medicines or surgery when it comes to Crohn’s disease and ulcerative colitis, but what about holistic wellness? It’s all of this. It’s the medication piece, but it’s all of these other pillars involved in the process as well. I think looking at this from many different angles is very important so that patients can achieve the best quality of life possible,” said comoderator Tina Aswani Omprakash, a patient advocate who is pursuing a master’s degree in public health at Mount Sinai’s Icahn School of Medicine.

Physicians treating patients with IBD typically focus on disease and symptom management along with quality of life measures, but the latter are not the final word on patient well-being. Social well-being is another outcome that can more accurately portray a patient’s satisfaction with their treatment.

That was the message delivered by Laurie Keefer, PhD, at a session on diet, stress, health literacy, and disparities in IBD treatment at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association. “When we talk about disease management, we’re talking about these outcomes of mucosal healing, remission, and lack of hospitalizations, but we don’t always talk about wellness,” said Dr. Keefer, director of psychobehavioral research in the department of gastroenterology at Icahn School of Medicine at Mount Sinai, New York.

Dr. Keefer advocated for incorporating measures that focus on the patient’s ability to feel fulfilled, pursue happiness, and contribute to the community. “Wellness is defined as a state of complete physical, mental, and social well-being. It’s a holistic definition, not merely the absence of those things,” she said during her talk.

Social determinants of health, such as income, inequality, health literacy, numeracy, financial stress, social connections, community, place of resonance, and housing coresidents, play important roles.

“Subjective well-being is a state in which an individual feels they are able to do work productively and creatively, have relationships, and contribute to their community. We want them to thrive. We want them to live well. We want them to reach their potential. There’s no reason you cannot reach your potential even though you’re living with IBD,” said Dr. Keefer.

Subjective well-being doesn’t replace quality of life assessment. “Absolutely, quality of life is an important metric, [but I want to] make a plug that maybe we should start to add subjective well-being into these outcome measures,” said Dr. Keefer.

The approach does away with specific measures of health, employment, financial security, or even living situation. “It takes away all of those things we just assume are part of being well. It measures it differently. It measures what makes us happy, divided by the degree of happiness we obtain,” said Dr. Keefer. She presented examples from a study her group is conducting that showed patients’ responses to what made them want to be well. “Some people want to be well to take care of their children or families or a parent, some people want to be well so they can go adventure skydiving, other people just want to be able to exercise and take care of their health. That’s what the target needs to be for wellness. In that sense, wellness is an achievement of best health possible in all domains, not just one. It’s a lifelong pursuit. It forces us to ask not just ‘Are my patient’s symptoms gone? Are they in clinical remission? Are they in histological remission? Are they in deep remission?’ but ‘Is my patient thriving? Are they meeting their potential? Are they getting what they want out of treatment? Are they happy?’ ”

Quality of life measures can provide some insight, but they are limited because they are anchored in physical symptoms, and they focus on a narrow, recent window, usually the past week. “You can imagine that as symptoms improve, those metrics kind of improve, and it looks like quality of life is great. But that’s not always the case, and we’re really missing an opportunity to go deeper. It’s also less sensitive when somebody is in remission, so it’s also very difficult to continue that proactive [approach] of thriving and living well when you’re already coming up positive on quality of life indices,” said Dr. Keefer.

Subjective well-being measures ignore physical symptoms, and focus instead on questions like the patient’s ability to work, socialize, and maintain relationships with family, and whether the patient feels able to contribute meaningfully to society. The measure is insensitive to factors such as inflammation, trauma, or changes to medication. As a result, measures can be used much less frequently – every 6 months, or even once a year.

Subjective well-being can also rely on the patient to define well-being, and that makes it more culturally sensitive. “It can allow for people to be well in whatever way they think they want to be well,” said Dr. Keefer.

There are various resources for measuring subjective well-being. The Organization for Economic Cooperation and Development has guidelines for measuring subjective well-being. The National Institutes of Health PROMIS includes useful measures of psychological well-being, positive affect, and general life satisfaction; they are available for free and include 6-8 items. Other useful measures include the Satisfaction with Life scale, the Positive and Negative Affect scale, and the Harmony in Life scale. “All of those have been well validated and used internationally as measures of well-being,” said Dr. Keefer.

Physicians can also address patients directly, asking them about how satisfied they are with their life. “You’re opening up that discussion to ask them not just, ‘How is your IBD and how is your IBD affecting your work?’ but ‘How is your life going?’ You’re proactively trying to help your patients thrive,” said Dr. Keefer.

Session moderators praised Dr. Keefer’s presentation as an appropriate wrap-up to talks that looked at stress, diet, economic disparities, health literacy, and numeracy.

“We capped it all with a discussion around what is well-being. We often talk about biologics or medicines or surgery when it comes to Crohn’s disease and ulcerative colitis, but what about holistic wellness? It’s all of this. It’s the medication piece, but it’s all of these other pillars involved in the process as well. I think looking at this from many different angles is very important so that patients can achieve the best quality of life possible,” said comoderator Tina Aswani Omprakash, a patient advocate who is pursuing a master’s degree in public health at Mount Sinai’s Icahn School of Medicine.

Nonalcoholic fatty liver disease (NAFLD) in patients with inflammatory bowel disease (IBD) is associated with worse outcomes, and that relationship may be influenced by nonmetabolic factors. That is the conclusion of a new nationwide database analysis. NAFLD is common in IBD, with an estimated prevalence of 27%-32%.

Previous, smaller studies showed possible links between NAFLD and a history of IBD surgery, IBD disease activity, and metabolic factors, “but none of the studies looked at it on the scale that we did, and our study was more focused on outcomes than simply examining factors associated with both NAFLD and IBD,” Shaya Noorian, MD, of UCLA Medical Center in Los Angeles, said in an interview. Dr. Noorian presented the research at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

Dr. Noorian and colleagues found higher rates of hospital readmission, longer hospitalization, and higher costs, but not higher rates of death among patients with both Crohn’s disease or ulcerative colitis and NAFLD. The researchers analyzed data from patients in the Nationwide Readmissions Database (2016-2017), using ICD-10 codes to identify patients with IBD and NAFLD, along with propensity-matched controls. The study included 3,655 with Crohn’s disease and NAFLD and 7,482 without, and there were 2,026 with ulcerative colitis and NAFLD 4,094 without.

IBD hospital readmission rates were higher with comorbid NAFLD in Crohn’s disease (hazard ratio, 1.98; 95% confidence interval, 1.8-2.17; P < .001) and ulcerative colitis (HR, 1.97; 95% CI, 1.67-2.32; P < .001). Comorbid NAFLD was associated with additional length of stay Crohn’s disease (0.74 days; 95% CI, 0.29-1.18; P < .01) and ulcerative colitis (0.84 days; 0.32-1.35, respectively; P < .01), and there was additional cost of care with both Crohn’s disease ($7,766; 95% CI, $2,693-$12,839; P < .01) and ulcerative colitis ($11,496; 95% CI, $4,361-$18,631; P < .01).

Kaplan Meier curves for IBD readmission-free survival versus days since discharge showed clear separation in both Crohn’s disease and ulcerative colitis among patients with versus those without NAFLD.

Although evidence points to nonmetabolic factors being involved, metabolic factors such as obesity and diabetes are likely important as well. “We still do recognize that it’s very likely that these metabolic factors play a role in developing NAFLD in IBD. I think the fact that there are worse outcomes in patients with NAFLD supports the fact that we should do our best to control the metabolic factors like diabetes, obesity, et cetera. We don’t want to minimize that aspect of it. But I think the fact that there were still worse outcomes after adjusting for metabolic factors emphasizes the importance of researching these factors further to see which ones are the main contributors. If we can find the main contributor, whether that’s medication, IBD disease burden, or history of surgery, perhaps we can use that information to prevent development or progression of NAFLD,” said Dr. Noorian.

“Historical reports have examined the relationship between Crohn’s disease and NAFLD. The currently study included both Crohn’s and ulcerative colitis, thus impressively demonstrating the importance of this interaction across IBD,” said Matthew Ciorba, MD, director of the IBD Center at Washington University in St. Louis, who attended the session.

Nonalcoholic fatty liver disease (NAFLD) in patients with inflammatory bowel disease (IBD) is associated with worse outcomes, and that relationship may be influenced by nonmetabolic factors. That is the conclusion of a new nationwide database analysis. NAFLD is common in IBD, with an estimated prevalence of 27%-32%.

Previous, smaller studies showed possible links between NAFLD and a history of IBD surgery, IBD disease activity, and metabolic factors, “but none of the studies looked at it on the scale that we did, and our study was more focused on outcomes than simply examining factors associated with both NAFLD and IBD,” Shaya Noorian, MD, of UCLA Medical Center in Los Angeles, said in an interview. Dr. Noorian presented the research at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

Dr. Noorian and colleagues found higher rates of hospital readmission, longer hospitalization, and higher costs, but not higher rates of death among patients with both Crohn’s disease or ulcerative colitis and NAFLD. The researchers analyzed data from patients in the Nationwide Readmissions Database (2016-2017), using ICD-10 codes to identify patients with IBD and NAFLD, along with propensity-matched controls. The study included 3,655 with Crohn’s disease and NAFLD and 7,482 without, and there were 2,026 with ulcerative colitis and NAFLD 4,094 without.

IBD hospital readmission rates were higher with comorbid NAFLD in Crohn’s disease (hazard ratio, 1.98; 95% confidence interval, 1.8-2.17; P < .001) and ulcerative colitis (HR, 1.97; 95% CI, 1.67-2.32; P < .001). Comorbid NAFLD was associated with additional length of stay Crohn’s disease (0.74 days; 95% CI, 0.29-1.18; P < .01) and ulcerative colitis (0.84 days; 0.32-1.35, respectively; P < .01), and there was additional cost of care with both Crohn’s disease ($7,766; 95% CI, $2,693-$12,839; P < .01) and ulcerative colitis ($11,496; 95% CI, $4,361-$18,631; P < .01).

Kaplan Meier curves for IBD readmission-free survival versus days since discharge showed clear separation in both Crohn’s disease and ulcerative colitis among patients with versus those without NAFLD.

Although evidence points to nonmetabolic factors being involved, metabolic factors such as obesity and diabetes are likely important as well. “We still do recognize that it’s very likely that these metabolic factors play a role in developing NAFLD in IBD. I think the fact that there are worse outcomes in patients with NAFLD supports the fact that we should do our best to control the metabolic factors like diabetes, obesity, et cetera. We don’t want to minimize that aspect of it. But I think the fact that there were still worse outcomes after adjusting for metabolic factors emphasizes the importance of researching these factors further to see which ones are the main contributors. If we can find the main contributor, whether that’s medication, IBD disease burden, or history of surgery, perhaps we can use that information to prevent development or progression of NAFLD,” said Dr. Noorian.

“Historical reports have examined the relationship between Crohn’s disease and NAFLD. The currently study included both Crohn’s and ulcerative colitis, thus impressively demonstrating the importance of this interaction across IBD,” said Matthew Ciorba, MD, director of the IBD Center at Washington University in St. Louis, who attended the session.

Nonalcoholic fatty liver disease (NAFLD) in patients with inflammatory bowel disease (IBD) is associated with worse outcomes, and that relationship may be influenced by nonmetabolic factors. That is the conclusion of a new nationwide database analysis. NAFLD is common in IBD, with an estimated prevalence of 27%-32%.

Previous, smaller studies showed possible links between NAFLD and a history of IBD surgery, IBD disease activity, and metabolic factors, “but none of the studies looked at it on the scale that we did, and our study was more focused on outcomes than simply examining factors associated with both NAFLD and IBD,” Shaya Noorian, MD, of UCLA Medical Center in Los Angeles, said in an interview. Dr. Noorian presented the research at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

Dr. Noorian and colleagues found higher rates of hospital readmission, longer hospitalization, and higher costs, but not higher rates of death among patients with both Crohn’s disease or ulcerative colitis and NAFLD. The researchers analyzed data from patients in the Nationwide Readmissions Database (2016-2017), using ICD-10 codes to identify patients with IBD and NAFLD, along with propensity-matched controls. The study included 3,655 with Crohn’s disease and NAFLD and 7,482 without, and there were 2,026 with ulcerative colitis and NAFLD 4,094 without.

IBD hospital readmission rates were higher with comorbid NAFLD in Crohn’s disease (hazard ratio, 1.98; 95% confidence interval, 1.8-2.17; P < .001) and ulcerative colitis (HR, 1.97; 95% CI, 1.67-2.32; P < .001). Comorbid NAFLD was associated with additional length of stay Crohn’s disease (0.74 days; 95% CI, 0.29-1.18; P < .01) and ulcerative colitis (0.84 days; 0.32-1.35, respectively; P < .01), and there was additional cost of care with both Crohn’s disease ($7,766; 95% CI, $2,693-$12,839; P < .01) and ulcerative colitis ($11,496; 95% CI, $4,361-$18,631; P < .01).

Kaplan Meier curves for IBD readmission-free survival versus days since discharge showed clear separation in both Crohn’s disease and ulcerative colitis among patients with versus those without NAFLD.

Although evidence points to nonmetabolic factors being involved, metabolic factors such as obesity and diabetes are likely important as well. “We still do recognize that it’s very likely that these metabolic factors play a role in developing NAFLD in IBD. I think the fact that there are worse outcomes in patients with NAFLD supports the fact that we should do our best to control the metabolic factors like diabetes, obesity, et cetera. We don’t want to minimize that aspect of it. But I think the fact that there were still worse outcomes after adjusting for metabolic factors emphasizes the importance of researching these factors further to see which ones are the main contributors. If we can find the main contributor, whether that’s medication, IBD disease burden, or history of surgery, perhaps we can use that information to prevent development or progression of NAFLD,” said Dr. Noorian.

“Historical reports have examined the relationship between Crohn’s disease and NAFLD. The currently study included both Crohn’s and ulcerative colitis, thus impressively demonstrating the importance of this interaction across IBD,” said Matthew Ciorba, MD, director of the IBD Center at Washington University in St. Louis, who attended the session.

Although inflammatory bowel disease (IBD) affects primarily White patients, about one-quarter of cases are found in non-White racial and ethnic groups. Various factors have combined to lead to disparities in treatment and outcomes for non-Whites with IBD.

Ethnic and racial disparities, along with socioeconomic factors, were the subject of a presentation by Ruby Greywoode, MD, at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

“Historical and present-day realities of racial inequity and factors that contribute to socioeconomic status [include] educational and housing policies, employment practices, and generational wealth. Addressing health disparities requires acknowledging these systemic factors,” said Dr. Greywoode, who is with Montefiore Medical Center in New York.

An important concept in discussing health disparity is social determinants of health, which refers to nonbiological factors that affect health and health outcomes. These are “the conditions in which people live, work, learn, and play that affect their health and their quality of life,” said Dr. Greywoode. 

Dr. Greywoode shared examples of social determinants that affect economic stability and financial worry. One study found that one in six IBD patients reported not taking their medications because of cost considerations. A survey of about 900 adults showed that 1 in 4 delayed medical care – half of those because of cost; patients who delayed care were 2.5 times more likely to report an IBD flare in the previous year.

Another important issue is food insecurity. Other presenters at the session emphasized the importance of high-quality nutrition in IBD, and Dr. Greywoode presented one survey showing that only 9% of patients who had both food security and social support reported cost-related medication nonadherence. Among those that had either food insecurity or poor social support, 12% reported cost-related medication nonadherence, but the proportion jumped to 57% among patients who had both food insecurity and lack of social support.

Session comoderator Kelly Issokson noted that socioeconomic factors often interfere with adoption of healthy diets. Whole foods and plant-based foods are expensive, and the financial pressures of the COVID-19 epidemic have made that worse. “Millions of people are slipping into poverty and food insecurity. This is one of the things she highlighted as factors in medication nonadherence,” said Ms. Issokson, who is the clinical nutritional coordinator at the digestive disease clinic at Cedars-Sinai Medical Center in Los Angeles.

Dr. Greywoode also described studies that looked at race, socioeconomic status, and IBD outcomes. A review from 2013 showed disparities among Whites, African Americans, and Hispanics with respect to undergoing ulcerative colitis–related colectomy and Crohn’s disease–related bowel resection. Ulcerative colitis patients on Medicaid had 230% greater in-patient mortality, compared with patients with private insurance, even after adjustment for multiple confounders.

But inequities are not static. “Since this publication, we have numerous other studies drawing conclusions that sometimes agree with and sometimes conflict with it. My belief is that health disparities in IBD will continue to be an active area of research. We know that it takes vigilance to identify, track, and address any disparities when they do arise,” said Dr. Greywoode.

Dr. Greywoode also noted that phenotypic differences based on race and ethnicity influence disparities. She showed results from a meta-analysis that found a difference in the frequency of perianal Crohn’s disease by race and ethnicity; the highest frequency occurred in Black patients (31%), followed by Asians (22%), Whites (14%), and Hispanics (13%). Another study showed that African American patients with Crohn’s disease were more likely to develop a new abscess (adjusted odds ratio, 2.27; 95% confidence interval, 1.31-3.93) or anal fissure (aOR, 1.76; 95% CI, 1.01-3.07), and were also more likely to be initiated on an anti–tumor necrosis factor drug (aOR, 1.85; 95% CI, 1.09-3.14).

Those differences underscore the need to recognize that IBD is not just a disease for White patients. “As we move forward in IBD research, we recognize that individuals of European ancestry are not the only ones who have IBD. There is a growing diverse racial and ethnic population with IBD,” said Dr. Greywoode.

She noted that, in the United States, it is estimated that about one in four adult patients are non-Hispanic African American, Hispanic, Asians, or other ethnicities. Nevertheless, Whites are overrepresented among participants in IBD clinical trials. Some trials are composed of as much as 95% White patients, and sometimes race isn’t even listed. “It’s unclear if [race/ethnicity data are] not collected or not deemed important, but we know that what is not collected is not measured, and what is not measured can’t be evaluated, either to praise or constructively criticize,” said Dr. Greywoode.

Fortunately, there are efforts in place to improve representation in clinical trials. There has been a mandate for almost 3 decades that federally funded research must include racial and ethnic minorities who have been traditionally underrepresented. The Food and Drug Administration has also provided guidance to industry to improve diversity in clinical trial participation, and industry groups have developed strategies, including improved representation among investigators and related early-career development programs. At the community and independent health care practice levels, clinical trial networks encourage patient participation with regulatory and data management support to bolster practices with insufficient resources.

Underrepresentation in clinical trials resonated with comoderator Tina Aswani Omprakash, who is a patient advocate and a master’s in public health student at the Icahn School of Medicine at Mount Sinai, New York. She called for greater awareness among physicians that IBD can occur among people of all backgrounds. “[Providers] would look at me and [say]: ‘There’s no way that, as a South Asian woman, you have that kind of disease.’ There’s that lack of believability,” said Ms. Aswani Omprakash.

Greater recognition of the diversity of patients, as well as the phenotypic differences found among ethnicities, could also inform clinical trial participation and, ultimately, more personalized medicine. “We have to look at these things, observe how they’re affecting populations differently, so that we can have proper medication solutions,” said Ms. Aswani Omprakash.

Dr. Greywoode and Ms. Issokson have no relevant financial disclosures. Ms. Aswani Omprakash has consulted for Genentech, AbbVie, Janssen, and Arena.

The AGA applauds researchers who are working to raise our awareness of health disparities in digestive diseases. The AGA is committed to addressing this important societal issue head on. Learn more about AGA’s commitment through the AGA Equity Project.

Updated Feb. 17, 2021.
 

Although inflammatory bowel disease (IBD) affects primarily White patients, about one-quarter of cases are found in non-White racial and ethnic groups. Various factors have combined to lead to disparities in treatment and outcomes for non-Whites with IBD.

Ethnic and racial disparities, along with socioeconomic factors, were the subject of a presentation by Ruby Greywoode, MD, at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

“Historical and present-day realities of racial inequity and factors that contribute to socioeconomic status [include] educational and housing policies, employment practices, and generational wealth. Addressing health disparities requires acknowledging these systemic factors,” said Dr. Greywoode, who is with Montefiore Medical Center in New York.

An important concept in discussing health disparity is social determinants of health, which refers to nonbiological factors that affect health and health outcomes. These are “the conditions in which people live, work, learn, and play that affect their health and their quality of life,” said Dr. Greywoode. 

Dr. Greywoode shared examples of social determinants that affect economic stability and financial worry. One study found that one in six IBD patients reported not taking their medications because of cost considerations. A survey of about 900 adults showed that 1 in 4 delayed medical care – half of those because of cost; patients who delayed care were 2.5 times more likely to report an IBD flare in the previous year.

Another important issue is food insecurity. Other presenters at the session emphasized the importance of high-quality nutrition in IBD, and Dr. Greywoode presented one survey showing that only 9% of patients who had both food security and social support reported cost-related medication nonadherence. Among those that had either food insecurity or poor social support, 12% reported cost-related medication nonadherence, but the proportion jumped to 57% among patients who had both food insecurity and lack of social support.

Session comoderator Kelly Issokson noted that socioeconomic factors often interfere with adoption of healthy diets. Whole foods and plant-based foods are expensive, and the financial pressures of the COVID-19 epidemic have made that worse. “Millions of people are slipping into poverty and food insecurity. This is one of the things she highlighted as factors in medication nonadherence,” said Ms. Issokson, who is the clinical nutritional coordinator at the digestive disease clinic at Cedars-Sinai Medical Center in Los Angeles.

Dr. Greywoode also described studies that looked at race, socioeconomic status, and IBD outcomes. A review from 2013 showed disparities among Whites, African Americans, and Hispanics with respect to undergoing ulcerative colitis–related colectomy and Crohn’s disease–related bowel resection. Ulcerative colitis patients on Medicaid had 230% greater in-patient mortality, compared with patients with private insurance, even after adjustment for multiple confounders.

But inequities are not static. “Since this publication, we have numerous other studies drawing conclusions that sometimes agree with and sometimes conflict with it. My belief is that health disparities in IBD will continue to be an active area of research. We know that it takes vigilance to identify, track, and address any disparities when they do arise,” said Dr. Greywoode.

Dr. Greywoode also noted that phenotypic differences based on race and ethnicity influence disparities. She showed results from a meta-analysis that found a difference in the frequency of perianal Crohn’s disease by race and ethnicity; the highest frequency occurred in Black patients (31%), followed by Asians (22%), Whites (14%), and Hispanics (13%). Another study showed that African American patients with Crohn’s disease were more likely to develop a new abscess (adjusted odds ratio, 2.27; 95% confidence interval, 1.31-3.93) or anal fissure (aOR, 1.76; 95% CI, 1.01-3.07), and were also more likely to be initiated on an anti–tumor necrosis factor drug (aOR, 1.85; 95% CI, 1.09-3.14).

Those differences underscore the need to recognize that IBD is not just a disease for White patients. “As we move forward in IBD research, we recognize that individuals of European ancestry are not the only ones who have IBD. There is a growing diverse racial and ethnic population with IBD,” said Dr. Greywoode.

She noted that, in the United States, it is estimated that about one in four adult patients are non-Hispanic African American, Hispanic, Asians, or other ethnicities. Nevertheless, Whites are overrepresented among participants in IBD clinical trials. Some trials are composed of as much as 95% White patients, and sometimes race isn’t even listed. “It’s unclear if [race/ethnicity data are] not collected or not deemed important, but we know that what is not collected is not measured, and what is not measured can’t be evaluated, either to praise or constructively criticize,” said Dr. Greywoode.

Fortunately, there are efforts in place to improve representation in clinical trials. There has been a mandate for almost 3 decades that federally funded research must include racial and ethnic minorities who have been traditionally underrepresented. The Food and Drug Administration has also provided guidance to industry to improve diversity in clinical trial participation, and industry groups have developed strategies, including improved representation among investigators and related early-career development programs. At the community and independent health care practice levels, clinical trial networks encourage patient participation with regulatory and data management support to bolster practices with insufficient resources.

Underrepresentation in clinical trials resonated with comoderator Tina Aswani Omprakash, who is a patient advocate and a master’s in public health student at the Icahn School of Medicine at Mount Sinai, New York. She called for greater awareness among physicians that IBD can occur among people of all backgrounds. “[Providers] would look at me and [say]: ‘There’s no way that, as a South Asian woman, you have that kind of disease.’ There’s that lack of believability,” said Ms. Aswani Omprakash.

Greater recognition of the diversity of patients, as well as the phenotypic differences found among ethnicities, could also inform clinical trial participation and, ultimately, more personalized medicine. “We have to look at these things, observe how they’re affecting populations differently, so that we can have proper medication solutions,” said Ms. Aswani Omprakash.

Dr. Greywoode and Ms. Issokson have no relevant financial disclosures. Ms. Aswani Omprakash has consulted for Genentech, AbbVie, Janssen, and Arena.

The AGA applauds researchers who are working to raise our awareness of health disparities in digestive diseases. The AGA is committed to addressing this important societal issue head on. Learn more about AGA’s commitment through the AGA Equity Project.

Updated Feb. 17, 2021.
 

Although inflammatory bowel disease (IBD) affects primarily White patients, about one-quarter of cases are found in non-White racial and ethnic groups. Various factors have combined to lead to disparities in treatment and outcomes for non-Whites with IBD.

Ethnic and racial disparities, along with socioeconomic factors, were the subject of a presentation by Ruby Greywoode, MD, at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

“Historical and present-day realities of racial inequity and factors that contribute to socioeconomic status [include] educational and housing policies, employment practices, and generational wealth. Addressing health disparities requires acknowledging these systemic factors,” said Dr. Greywoode, who is with Montefiore Medical Center in New York.

An important concept in discussing health disparity is social determinants of health, which refers to nonbiological factors that affect health and health outcomes. These are “the conditions in which people live, work, learn, and play that affect their health and their quality of life,” said Dr. Greywoode. 

Dr. Greywoode shared examples of social determinants that affect economic stability and financial worry. One study found that one in six IBD patients reported not taking their medications because of cost considerations. A survey of about 900 adults showed that 1 in 4 delayed medical care – half of those because of cost; patients who delayed care were 2.5 times more likely to report an IBD flare in the previous year.

Another important issue is food insecurity. Other presenters at the session emphasized the importance of high-quality nutrition in IBD, and Dr. Greywoode presented one survey showing that only 9% of patients who had both food security and social support reported cost-related medication nonadherence. Among those that had either food insecurity or poor social support, 12% reported cost-related medication nonadherence, but the proportion jumped to 57% among patients who had both food insecurity and lack of social support.

Session comoderator Kelly Issokson noted that socioeconomic factors often interfere with adoption of healthy diets. Whole foods and plant-based foods are expensive, and the financial pressures of the COVID-19 epidemic have made that worse. “Millions of people are slipping into poverty and food insecurity. This is one of the things she highlighted as factors in medication nonadherence,” said Ms. Issokson, who is the clinical nutritional coordinator at the digestive disease clinic at Cedars-Sinai Medical Center in Los Angeles.

Dr. Greywoode also described studies that looked at race, socioeconomic status, and IBD outcomes. A review from 2013 showed disparities among Whites, African Americans, and Hispanics with respect to undergoing ulcerative colitis–related colectomy and Crohn’s disease–related bowel resection. Ulcerative colitis patients on Medicaid had 230% greater in-patient mortality, compared with patients with private insurance, even after adjustment for multiple confounders.

But inequities are not static. “Since this publication, we have numerous other studies drawing conclusions that sometimes agree with and sometimes conflict with it. My belief is that health disparities in IBD will continue to be an active area of research. We know that it takes vigilance to identify, track, and address any disparities when they do arise,” said Dr. Greywoode.

Dr. Greywoode also noted that phenotypic differences based on race and ethnicity influence disparities. She showed results from a meta-analysis that found a difference in the frequency of perianal Crohn’s disease by race and ethnicity; the highest frequency occurred in Black patients (31%), followed by Asians (22%), Whites (14%), and Hispanics (13%). Another study showed that African American patients with Crohn’s disease were more likely to develop a new abscess (adjusted odds ratio, 2.27; 95% confidence interval, 1.31-3.93) or anal fissure (aOR, 1.76; 95% CI, 1.01-3.07), and were also more likely to be initiated on an anti–tumor necrosis factor drug (aOR, 1.85; 95% CI, 1.09-3.14).

Those differences underscore the need to recognize that IBD is not just a disease for White patients. “As we move forward in IBD research, we recognize that individuals of European ancestry are not the only ones who have IBD. There is a growing diverse racial and ethnic population with IBD,” said Dr. Greywoode.

She noted that, in the United States, it is estimated that about one in four adult patients are non-Hispanic African American, Hispanic, Asians, or other ethnicities. Nevertheless, Whites are overrepresented among participants in IBD clinical trials. Some trials are composed of as much as 95% White patients, and sometimes race isn’t even listed. “It’s unclear if [race/ethnicity data are] not collected or not deemed important, but we know that what is not collected is not measured, and what is not measured can’t be evaluated, either to praise or constructively criticize,” said Dr. Greywoode.

Fortunately, there are efforts in place to improve representation in clinical trials. There has been a mandate for almost 3 decades that federally funded research must include racial and ethnic minorities who have been traditionally underrepresented. The Food and Drug Administration has also provided guidance to industry to improve diversity in clinical trial participation, and industry groups have developed strategies, including improved representation among investigators and related early-career development programs. At the community and independent health care practice levels, clinical trial networks encourage patient participation with regulatory and data management support to bolster practices with insufficient resources.

Underrepresentation in clinical trials resonated with comoderator Tina Aswani Omprakash, who is a patient advocate and a master’s in public health student at the Icahn School of Medicine at Mount Sinai, New York. She called for greater awareness among physicians that IBD can occur among people of all backgrounds. “[Providers] would look at me and [say]: ‘There’s no way that, as a South Asian woman, you have that kind of disease.’ There’s that lack of believability,” said Ms. Aswani Omprakash.

Greater recognition of the diversity of patients, as well as the phenotypic differences found among ethnicities, could also inform clinical trial participation and, ultimately, more personalized medicine. “We have to look at these things, observe how they’re affecting populations differently, so that we can have proper medication solutions,” said Ms. Aswani Omprakash.

Dr. Greywoode and Ms. Issokson have no relevant financial disclosures. Ms. Aswani Omprakash has consulted for Genentech, AbbVie, Janssen, and Arena.

The AGA applauds researchers who are working to raise our awareness of health disparities in digestive diseases. The AGA is committed to addressing this important societal issue head on. Learn more about AGA’s commitment through the AGA Equity Project.

Updated Feb. 17, 2021.
 

Multicenter and population cohort studies suggest that patients with inflammatory bowel disease (IBD) are not at unique risk of contracting COVID-19 or experiencing worse outcomes, with the exception of a few risk factors such as corticosteroid use and combination therapy that appear tied to greater risk of hospitalization and mortality. The findings line up well with previous experience with infectious disease and are reassuring, but they also underscore the need to taper steroids and de-escalate from combination therapy, when possible.

“There is not a clear increased risk of getting COVID-19 among IBD patients compared to the general population, and that seems to hold even if you look at certain medication types, [even] if patients are on immunosuppressives like thiopurines or anti-TNF [anti–tumor necrosis factor] drugs,” Ryan C. Ungaro, MD, said in an interview. Dr. Ungaro, who is with the Icahn School of Medicine at Mount Sinai, New York, discussed IBD and COVID-19 risks at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

This article was updated Jan. 27, 2021.

Multicenter and population cohort studies suggest that patients with inflammatory bowel disease (IBD) are not at unique risk of contracting COVID-19 or experiencing worse outcomes, with the exception of a few risk factors such as corticosteroid use and combination therapy that appear tied to greater risk of hospitalization and mortality. The findings line up well with previous experience with infectious disease and are reassuring, but they also underscore the need to taper steroids and de-escalate from combination therapy, when possible.

“There is not a clear increased risk of getting COVID-19 among IBD patients compared to the general population, and that seems to hold even if you look at certain medication types, [even] if patients are on immunosuppressives like thiopurines or anti-TNF [anti–tumor necrosis factor] drugs,” Ryan C. Ungaro, MD, said in an interview. Dr. Ungaro, who is with the Icahn School of Medicine at Mount Sinai, New York, discussed IBD and COVID-19 risks at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

This article was updated Jan. 27, 2021.

Multicenter and population cohort studies suggest that patients with inflammatory bowel disease (IBD) are not at unique risk of contracting COVID-19 or experiencing worse outcomes, with the exception of a few risk factors such as corticosteroid use and combination therapy that appear tied to greater risk of hospitalization and mortality. The findings line up well with previous experience with infectious disease and are reassuring, but they also underscore the need to taper steroids and de-escalate from combination therapy, when possible.

“There is not a clear increased risk of getting COVID-19 among IBD patients compared to the general population, and that seems to hold even if you look at certain medication types, [even] if patients are on immunosuppressives like thiopurines or anti-TNF [anti–tumor necrosis factor] drugs,” Ryan C. Ungaro, MD, said in an interview. Dr. Ungaro, who is with the Icahn School of Medicine at Mount Sinai, New York, discussed IBD and COVID-19 risks at the annual congress of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

This article was updated Jan. 27, 2021.