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It’s been over 2 decades since 37-year-old Joshua Denton was diagnosed with ulcerative colitis.
Controlling the physical symptoms of comorbidities, such as inflammatory bowel disease, have been possible, but he was surprised when depression and anxiety set in.
“You’re dealing with what I call the anxiety of the unknown. What does this mean?” said Mr. Denton, who serves as a patient advocate with Color of Crohn’s & Chronic Illness, a nonprofit group aimed at improving quality of life for racial-ethnic minorities. “When you understand that it’s autoimmune that is chronic and incurable, you’re wondering, ‘Am I going to have a chance to get better in terms of my quality-of-life? Is it going to get worse?’ It indirectly builds this level of anxiety.”
Mr. Denton described a level of anxiety and depression that other patients living with inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis, described in a recent survey from the American Gastroenterological Association. Survey results, released in March, show how emotional and social challenges are top of mind for patients living with IBD, but not so much for gastroenterologists who said they’re more concerned about treating physical health than emotional health and believe mental health is sufficiently addressed in their patients’ IBD care.
In response,
Discussions about mental health challenges are difficult for both physician and patients. For patients, they may be unwilling to talk to their physicians out of concern of being a burden, while physicians may be reluctant to pry or intrude. “I want to dispel the myth to the patients (and tell them) that your doctor actually would love to know, but is afraid to pry. And to the doctor: Your patient wants you to know, but is afraid to be a burden,” said Laurie A. Keefer, PhD, a psychologist at Icahn School of Medicine at Mount Sinai, New York, who specializes in the psychosocial care of patients with chronic digestive diseases and serves as an adviser to the My IBD Life campaign, which was launched to support both patients living with IBD and their health care providers.
But “prying” in this way is important, Dr. Keefer said. Depression and anxiety can have wide-ranging effects on patient outcomes. Depressed patients may not follow through with medication refills or may be more accepting of disability, while anxiety can lead to worries about colonoscopies or surgeries, which can lead to avoidance. “I always tell GI providers, if you can’t figure out why someone never follows through with that test or that procedure, consider anxiety before you assume that it’s just nonadherence. Anxiety and depression really affect how somebody follows the requirements they need to manage their disease,” said Dr. Keefer.
Rates of anxiety among patients are increasing
The survey included 1,026 adults (18-59 years) with IBD and of these, 63% reported having comorbid conditions, such as anxiety (36%) and depression (35%). These rates are significantly higher than in the general population – at 19% and 8%, respectively. The rate of anxiety among patients with IBD has increased since AGA conducted a similar survey in 2017.
Patients reported that they were most concerned with the ways that IBD affects their mental health or emotional health and day-to-day life. Many said their providers were more concerned about treating them physically than emotionally and expressed a need for additional information on IBD treatment options (37%) and medications (35%). They also desired more information about the impact on emotional and mental health (25%), which has increased since the 2017 survey.
The No. 1 concern for patients was the need to consider bathroom logistics when away from home (7.03 on a scale of 1-10). The second most popular concern was mental and emotional health with a rating of 6.51 on a 1-10 scale. Thirty percent requested more information about diet and 27% asked for more information about general IBD symptoms.
Both patients and providers were less satisfied with emotional and social care than physical care for IBD. Among patients, women and those between ages 18 and 39 said they were the least satisfied with their care.
“We must always consider the mind and body together when managing a chronic disease, and IBD is no exception,” Dr. Keefer said. “We also know that failure to address emotional concerns in IBD leads to poorer disease outcomes, not just reduced quality of life.”
The surveys also highlighted different experiences among communities. For instance, people of color, particularly those in the Black community, were more likely to report that their IBD journey was impacted by their personal identity, whether by race, ethnicity, culture, sexual orientation, gender identity, or age.
In contrast, a companion survey of 117 gastroenterologists found that providers are focused on physical health over emotional health (8.34 on a scale of 1-10), but they reported having sufficiently addressed concerns their patients may have expressed about mental health issues. At the same time, many also said they feel more equipped to treat their patients physically rather than emotionally.
The provider survey showed their biggest challenge was in securing insurance authorizations for medications.
Mr. Denton encourages all patients to be as transparent as possible with their providers and family members.
“I firmly believe you cannot internalize the experience and keep it to yourself. I strongly encourage other patients with IBD to continue to push themselves to be as transparent as possible with their loved ones and health care professionals, because the more we talk about it, the more we can humanize the experience and allow people that aren’t health care professionals to have a more empathetic understanding of what we’re dealing with which in turn, hopefully, will provide better support and resources,” Mr. Denton said.
The My IBD Life website provides resources for patients to navigate a range of common scenarios, including conversations about new medications, workplace concerns, intimacy and relationships, vacations and travel, and medical procedures and surgeries. An interactive 3D graphic demonstrates how IBD affects the body, and videos of patients highlight personal experiences and ways to build emotional resilience.
The My IBD Life campaign is supported by an independent grant from Bristol Myers Squibb.
It’s been over 2 decades since 37-year-old Joshua Denton was diagnosed with ulcerative colitis.
Controlling the physical symptoms of comorbidities, such as inflammatory bowel disease, have been possible, but he was surprised when depression and anxiety set in.
“You’re dealing with what I call the anxiety of the unknown. What does this mean?” said Mr. Denton, who serves as a patient advocate with Color of Crohn’s & Chronic Illness, a nonprofit group aimed at improving quality of life for racial-ethnic minorities. “When you understand that it’s autoimmune that is chronic and incurable, you’re wondering, ‘Am I going to have a chance to get better in terms of my quality-of-life? Is it going to get worse?’ It indirectly builds this level of anxiety.”
Mr. Denton described a level of anxiety and depression that other patients living with inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis, described in a recent survey from the American Gastroenterological Association. Survey results, released in March, show how emotional and social challenges are top of mind for patients living with IBD, but not so much for gastroenterologists who said they’re more concerned about treating physical health than emotional health and believe mental health is sufficiently addressed in their patients’ IBD care.
In response,
Discussions about mental health challenges are difficult for both physician and patients. For patients, they may be unwilling to talk to their physicians out of concern of being a burden, while physicians may be reluctant to pry or intrude. “I want to dispel the myth to the patients (and tell them) that your doctor actually would love to know, but is afraid to pry. And to the doctor: Your patient wants you to know, but is afraid to be a burden,” said Laurie A. Keefer, PhD, a psychologist at Icahn School of Medicine at Mount Sinai, New York, who specializes in the psychosocial care of patients with chronic digestive diseases and serves as an adviser to the My IBD Life campaign, which was launched to support both patients living with IBD and their health care providers.
But “prying” in this way is important, Dr. Keefer said. Depression and anxiety can have wide-ranging effects on patient outcomes. Depressed patients may not follow through with medication refills or may be more accepting of disability, while anxiety can lead to worries about colonoscopies or surgeries, which can lead to avoidance. “I always tell GI providers, if you can’t figure out why someone never follows through with that test or that procedure, consider anxiety before you assume that it’s just nonadherence. Anxiety and depression really affect how somebody follows the requirements they need to manage their disease,” said Dr. Keefer.
Rates of anxiety among patients are increasing
The survey included 1,026 adults (18-59 years) with IBD and of these, 63% reported having comorbid conditions, such as anxiety (36%) and depression (35%). These rates are significantly higher than in the general population – at 19% and 8%, respectively. The rate of anxiety among patients with IBD has increased since AGA conducted a similar survey in 2017.
Patients reported that they were most concerned with the ways that IBD affects their mental health or emotional health and day-to-day life. Many said their providers were more concerned about treating them physically than emotionally and expressed a need for additional information on IBD treatment options (37%) and medications (35%). They also desired more information about the impact on emotional and mental health (25%), which has increased since the 2017 survey.
The No. 1 concern for patients was the need to consider bathroom logistics when away from home (7.03 on a scale of 1-10). The second most popular concern was mental and emotional health with a rating of 6.51 on a 1-10 scale. Thirty percent requested more information about diet and 27% asked for more information about general IBD symptoms.
Both patients and providers were less satisfied with emotional and social care than physical care for IBD. Among patients, women and those between ages 18 and 39 said they were the least satisfied with their care.
“We must always consider the mind and body together when managing a chronic disease, and IBD is no exception,” Dr. Keefer said. “We also know that failure to address emotional concerns in IBD leads to poorer disease outcomes, not just reduced quality of life.”
The surveys also highlighted different experiences among communities. For instance, people of color, particularly those in the Black community, were more likely to report that their IBD journey was impacted by their personal identity, whether by race, ethnicity, culture, sexual orientation, gender identity, or age.
In contrast, a companion survey of 117 gastroenterologists found that providers are focused on physical health over emotional health (8.34 on a scale of 1-10), but they reported having sufficiently addressed concerns their patients may have expressed about mental health issues. At the same time, many also said they feel more equipped to treat their patients physically rather than emotionally.
The provider survey showed their biggest challenge was in securing insurance authorizations for medications.
Mr. Denton encourages all patients to be as transparent as possible with their providers and family members.
“I firmly believe you cannot internalize the experience and keep it to yourself. I strongly encourage other patients with IBD to continue to push themselves to be as transparent as possible with their loved ones and health care professionals, because the more we talk about it, the more we can humanize the experience and allow people that aren’t health care professionals to have a more empathetic understanding of what we’re dealing with which in turn, hopefully, will provide better support and resources,” Mr. Denton said.
The My IBD Life website provides resources for patients to navigate a range of common scenarios, including conversations about new medications, workplace concerns, intimacy and relationships, vacations and travel, and medical procedures and surgeries. An interactive 3D graphic demonstrates how IBD affects the body, and videos of patients highlight personal experiences and ways to build emotional resilience.
The My IBD Life campaign is supported by an independent grant from Bristol Myers Squibb.
It’s been over 2 decades since 37-year-old Joshua Denton was diagnosed with ulcerative colitis.
Controlling the physical symptoms of comorbidities, such as inflammatory bowel disease, have been possible, but he was surprised when depression and anxiety set in.
“You’re dealing with what I call the anxiety of the unknown. What does this mean?” said Mr. Denton, who serves as a patient advocate with Color of Crohn’s & Chronic Illness, a nonprofit group aimed at improving quality of life for racial-ethnic minorities. “When you understand that it’s autoimmune that is chronic and incurable, you’re wondering, ‘Am I going to have a chance to get better in terms of my quality-of-life? Is it going to get worse?’ It indirectly builds this level of anxiety.”
Mr. Denton described a level of anxiety and depression that other patients living with inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis, described in a recent survey from the American Gastroenterological Association. Survey results, released in March, show how emotional and social challenges are top of mind for patients living with IBD, but not so much for gastroenterologists who said they’re more concerned about treating physical health than emotional health and believe mental health is sufficiently addressed in their patients’ IBD care.
In response,
Discussions about mental health challenges are difficult for both physician and patients. For patients, they may be unwilling to talk to their physicians out of concern of being a burden, while physicians may be reluctant to pry or intrude. “I want to dispel the myth to the patients (and tell them) that your doctor actually would love to know, but is afraid to pry. And to the doctor: Your patient wants you to know, but is afraid to be a burden,” said Laurie A. Keefer, PhD, a psychologist at Icahn School of Medicine at Mount Sinai, New York, who specializes in the psychosocial care of patients with chronic digestive diseases and serves as an adviser to the My IBD Life campaign, which was launched to support both patients living with IBD and their health care providers.
But “prying” in this way is important, Dr. Keefer said. Depression and anxiety can have wide-ranging effects on patient outcomes. Depressed patients may not follow through with medication refills or may be more accepting of disability, while anxiety can lead to worries about colonoscopies or surgeries, which can lead to avoidance. “I always tell GI providers, if you can’t figure out why someone never follows through with that test or that procedure, consider anxiety before you assume that it’s just nonadherence. Anxiety and depression really affect how somebody follows the requirements they need to manage their disease,” said Dr. Keefer.
Rates of anxiety among patients are increasing
The survey included 1,026 adults (18-59 years) with IBD and of these, 63% reported having comorbid conditions, such as anxiety (36%) and depression (35%). These rates are significantly higher than in the general population – at 19% and 8%, respectively. The rate of anxiety among patients with IBD has increased since AGA conducted a similar survey in 2017.
Patients reported that they were most concerned with the ways that IBD affects their mental health or emotional health and day-to-day life. Many said their providers were more concerned about treating them physically than emotionally and expressed a need for additional information on IBD treatment options (37%) and medications (35%). They also desired more information about the impact on emotional and mental health (25%), which has increased since the 2017 survey.
The No. 1 concern for patients was the need to consider bathroom logistics when away from home (7.03 on a scale of 1-10). The second most popular concern was mental and emotional health with a rating of 6.51 on a 1-10 scale. Thirty percent requested more information about diet and 27% asked for more information about general IBD symptoms.
Both patients and providers were less satisfied with emotional and social care than physical care for IBD. Among patients, women and those between ages 18 and 39 said they were the least satisfied with their care.
“We must always consider the mind and body together when managing a chronic disease, and IBD is no exception,” Dr. Keefer said. “We also know that failure to address emotional concerns in IBD leads to poorer disease outcomes, not just reduced quality of life.”
The surveys also highlighted different experiences among communities. For instance, people of color, particularly those in the Black community, were more likely to report that their IBD journey was impacted by their personal identity, whether by race, ethnicity, culture, sexual orientation, gender identity, or age.
In contrast, a companion survey of 117 gastroenterologists found that providers are focused on physical health over emotional health (8.34 on a scale of 1-10), but they reported having sufficiently addressed concerns their patients may have expressed about mental health issues. At the same time, many also said they feel more equipped to treat their patients physically rather than emotionally.
The provider survey showed their biggest challenge was in securing insurance authorizations for medications.
Mr. Denton encourages all patients to be as transparent as possible with their providers and family members.
“I firmly believe you cannot internalize the experience and keep it to yourself. I strongly encourage other patients with IBD to continue to push themselves to be as transparent as possible with their loved ones and health care professionals, because the more we talk about it, the more we can humanize the experience and allow people that aren’t health care professionals to have a more empathetic understanding of what we’re dealing with which in turn, hopefully, will provide better support and resources,” Mr. Denton said.
The My IBD Life website provides resources for patients to navigate a range of common scenarios, including conversations about new medications, workplace concerns, intimacy and relationships, vacations and travel, and medical procedures and surgeries. An interactive 3D graphic demonstrates how IBD affects the body, and videos of patients highlight personal experiences and ways to build emotional resilience.
The My IBD Life campaign is supported by an independent grant from Bristol Myers Squibb.
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<root generator="drupal.xsl" gversion="1.7"> <header> <fileName>162822</fileName> <TBEID>0C04940F.SIG</TBEID> <TBUniqueIdentifier>MD_0C04940F</TBUniqueIdentifier> <newsOrJournal>News</newsOrJournal> <publisherName>Frontline Medical Communications</publisherName> <storyname>IBD mental health survey</storyname> <articleType>2</articleType> <TBLocation>Published-All Pubs</TBLocation> <QCDate>20230406T123706</QCDate> <firstPublished>20230406T125931</firstPublished> <LastPublished>20230419T103126</LastPublished> <pubStatus qcode="stat:"/> <embargoDate/> <killDate/> <CMSDate>20230406T125931</CMSDate> <articleSource/> <facebookInfo/> <meetingNumber/> <byline>Jim Kling and C Crist</byline> <bylineText>JIM KLING AND CAROLYN CRIST</bylineText> <bylineFull>JIM KLING AND CAROLYN CRIST</bylineFull> <bylineTitleText>MDedge News</bylineTitleText> <USOrGlobal/> <wireDocType/> <newsDocType>News</newsDocType> <journalDocType/> <linkLabel/> <pageRange/> <citation/> <quizID/> <indexIssueDate/> <itemClass qcode="ninat:text"/> <provider qcode="provider:imng"> <name>IMNG Medical Media</name> <rightsInfo> <copyrightHolder> <name>Frontline Medical News</name> </copyrightHolder> <copyrightNotice>Copyright (c) 2015 Frontline Medical News, a Frontline Medical Communications Inc. company. All rights reserved. This material may not be published, broadcast, copied, or otherwise reproduced or distributed without the prior written permission of Frontline Medical Communications Inc.</copyrightNotice> </rightsInfo> </provider> <abstract/> <metaDescription>the AGA has launched the My IBD Life campaign to provide resources to patients and help their health care providers become active partners in psychosocial care.</metaDescription> <articlePDF/> <teaserImage>294159</teaserImage> <teaser>AGA launches My IBD Life campaign to support patients with IBD and encourage providers to play a role.</teaser> <title>Patients with IBD express need for psychosocial support</title> <deck/> <disclaimer/> <AuthorList/> <articleURL/> <doi/> <pubMedID/> <publishXMLStatus/> <publishXMLVersion>2</publishXMLVersion> <useEISSN>0</useEISSN> <urgency/> <pubPubdateYear/> <pubPubdateMonth/> <pubPubdateDay/> <pubVolume/> <pubNumber/> <wireChannels/> <primaryCMSID/> <CMSIDs/> <keywords> <keyword>IBD</keyword> </keywords> <seeAlsos/> <publications_g> <publicationData> <publicationCode>im</publicationCode> <pubIssueName/> <pubArticleType/> <pubTopics/> <pubCategories/> <pubSections/> </publicationData> <publicationData> <publicationCode>GIHOLD</publicationCode> <pubIssueName>January 2014</pubIssueName> <pubArticleType/> <pubTopics/> <pubCategories/> <pubSections/> <journalTitle/> <journalFullTitle/> <copyrightStatement/> </publicationData> </publications_g> <publications> <term canonical="true">21</term> </publications> <sections> <term canonical="true">39313</term> </sections> <topics> <term canonical="true">213</term> </topics> <links> <link> <itemClass qcode="ninat:picture"/> <altRep contenttype="image/jpeg">images/24011bc6.jpg</altRep> <description role="drol:caption">Dr. Laurie A. Keefer</description> <description role="drol:credit"/> </link> </links> </header> <itemSet> <newsItem> <itemMeta> <itemRole>Main</itemRole> <itemClass>text</itemClass> <title>Patients with IBD express need for psychosocial support</title> <deck/> </itemMeta> <itemContent> <p>It’s been over 2 decades since 37-year-old Joshua Denton was diagnosed with ulcerative colitis. </p> <p>Controlling the physical symptoms of comorbidities, such as inflammatory bowel disease, have been possible, but he was surprised when depression and anxiety set in.<br/><br/>“You’re dealing with what I call the anxiety of the unknown. What does this mean?” said Mr. Denton, who serves as a patient advocate with <span class="Hyperlink"><a href="https://cocci.org/">Color of Crohn’s & Chronic Illness</a></span>, a nonprofit group aimed at improving quality of life for racial-ethnic minorities. “When you understand that it’s autoimmune that is chronic and incurable, you’re wondering, ‘Am I going to have a chance to get better in terms of my quality-of-life? Is it going to get worse?’ It indirectly builds this level of anxiety.” <br/><br/>Mr. Denton described a level of anxiety and depression that other patients living with inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis, described in a recent survey from the American Gastroenterological Association. Survey results, released in March, show how emotional and social challenges are top of mind for patients living with IBD, but not so much for gastroenterologists who said they’re more concerned about treating physical health than emotional health and believe mental health is sufficiently addressed in their patients’ IBD care.<br/><br/>In response, <span class="tag metaDescription">the AGA has launched the My IBD Life campaign to provide resources to patients and help their health care providers become active partners in psychosocial care. </span><br/><br/>Discussions about mental health challenges are difficult for both physician and patients. For patients, they may be unwilling to talk to their physicians out of concern of being a burden, while physicians may be reluctant to pry or intrude. “I want to dispel the myth to the patients (and tell them) that your doctor actually would love to know, but is afraid to pry. And to the doctor: Your patient wants you to know, but is afraid to be a burden,” said Laurie A. Keefer, PhD, a psychologist at Icahn School of Medicine at Mount Sinai, New York, who specializes in the psychosocial care of patients with chronic digestive diseases and serves as an adviser to the My IBD Life campaign, which was launched to support both patients living with IBD and their health care providers.<br/><br/>[[{"fid":"294159","view_mode":"medstat_image_flush_left","fields":{"format":"medstat_image_flush_left","field_file_image_alt_text[und][0][value]":"Laurie A. Keefer, PhD, psychologist at Icahn School of Medicine at Mount Sinai, New York","field_file_image_credit[und][0][value]":"","field_file_image_caption[und][0][value]":"Dr. Laurie A. Keefer"},"type":"media","attributes":{"class":"media-element file-medstat_image_flush_left"}}]]But “prying” in this way is important, Dr. Keefer said. Depression and anxiety can have wide-ranging effects on patient outcomes. Depressed patients may not follow through with medication refills or may be more accepting of disability, while anxiety can lead to worries about colonoscopies or surgeries, which can lead to avoidance. “I always tell GI providers, if you can’t figure out why someone never follows through with that test or that procedure, consider anxiety before you assume that it’s just nonadherence. Anxiety and depression really affect how somebody follows the requirements they need to manage their disease,” said Dr. Keefer.<br/><br/></p> <h2>Rates of anxiety among patients are increasing</h2> <p><span class="Hyperlink"><a href="https://aga-fileuploader-bucket.s3.us-east-2.amazonaws.com/Aga-Files/AGA%20My%20IBD%20Life%20-%20Public%20Release%20of%20Survey%20Findings.pdf">The survey</a> </span>included 1,026 adults (18-59 years) with IBD and of these, 63% reported having comorbid conditions, such as anxiety (36%) and depression (35%). These rates are significantly higher than in the general population – at 19% and 8%, respectively. The rate of anxiety among patients with IBD has increased since AGA conducted a similar survey in 2017.</p> <p>Patients reported that they were most concerned with the ways that IBD affects their mental health or emotional health and day-to-day life. Many said their providers were more concerned about treating them physically than emotionally and expressed a need for additional information on IBD treatment options (37%) and medications (35%). They also desired more information about the impact on emotional and mental health (25%), which has increased since the 2017 survey.<br/><br/>The No. 1 concern for patients was the need to consider bathroom logistics when away from home (7.03 on a scale of 1-10). The second most popular concern was mental and emotional health with a rating of 6.51 on a 1-10 scale. Thirty percent requested more information about diet and 27% asked for more information about general IBD symptoms. <br/><br/>Both patients and providers were less satisfied with emotional and social care than physical care for IBD. Among patients, women and those between ages 18 and 39 said they were the least satisfied with their care.<br/><br/>“We must always consider the mind and body together when managing a chronic disease, and IBD is no exception,” Dr. Keefer said. “We also know that failure to address emotional concerns in IBD leads to poorer disease outcomes, not just reduced quality of life.”<br/><br/>The surveys also highlighted different experiences among communities. For instance, people of color, particularly those in the Black community, were more likely to report that their IBD journey was impacted by their personal identity, whether by race, ethnicity, culture, sexual orientation, gender identity, or age. <br/><br/>In contrast, a companion survey of 117 gastroenterologists found that providers are focused on physical health over emotional health (8.34 on a scale of 1-10), but they reported having sufficiently addressed concerns their patients may have expressed about mental health issues. At the same time, many also said they feel more equipped to treat their patients physically rather than emotionally.<br/><br/>The provider survey showed their biggest challenge was in securing insurance authorizations for medications.<br/><br/>Mr. Denton encourages all patients to be as transparent as possible with their providers and family members.<br/><br/>“I firmly believe you cannot internalize the experience and keep it to yourself. I strongly encourage other patients with IBD to continue to push themselves to be as transparent as possible with their loved ones and health care professionals, because the more we talk about it, the more we can humanize the experience and allow people that aren’t health care professionals to have a more empathetic understanding of what we’re dealing with which in turn, hopefully, will provide better support and resources,” Mr. Denton said.<br/><br/>The <span class="Hyperlink"><a href="https://myibdlife.gastro.org/">My IBD Life website</a></span> provides resources for patients to navigate a range of common scenarios, including conversations about new medications, workplace concerns, intimacy and relationships, vacations and travel, and medical procedures and surgeries. An interactive 3D graphic demonstrates how IBD affects the body, and videos of patients highlight personal experiences and ways to build emotional resilience.<br/><br/>The My IBD Life campaign is supported by an independent grant from Bristol Myers Squibb.</p> </itemContent> </newsItem> <newsItem> <itemMeta> <itemRole>teaser</itemRole> <itemClass>text</itemClass> <title/> <deck/> </itemMeta> <itemContent> </itemContent> </newsItem> </itemSet></root>
