Bethesda, MD – (March 23, 2023) The American Gastroenterological Association (AGA) released new data highlighting how emotional and social challenges of living with inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis, are top of mind for patients but not necessarily their health care providers. To help address these challenges, AGA launched the My IBD Life campaign to support people living with IBD and equip their health care providers to be active partners in their care.
The survey of 1,026 people aged 18-59 diagnosed with IBD found that 63% report comorbid conditions – including more than one in three who report being diagnosed with anxiety (36%) and depression (35%). These rates of anxiety and depression are well above the U.S. national averages (19% and 8% respectively),i and reports of anxiety have risen since a similar survey was conducted by AGA in 2017 (from 30%). Despite the high rates of anxiety and depression among people with IBD, a companion survey of 117 gastroenterologists found that providers are more concerned about treating people with IBD physically than emotionally, and they often report mental health is sufficiently addressed in their patients’ IBD care.
“People living with Crohn’s disease and ulcerative colitis face many obstacles, which can take a toll on their mental health. This is especially true given that many people are newly navigating this chronic condition in their 20s or 30s, while also balancing growing their careers, forming new relationships, and starting families,” said Dr. Laurie Keefer, a psychologist at Mount Sinai who specializes in chronic digestive diseases and advisor to the AGA My IBD Life campaign. “However, we know that building emotional resilience can reduce the likelihood of a patient developing depression and anxiety. We are thrilled to offer new resources through the My IBD Life campaign that share real-life advice and coping strategies to help those living with IBD face obstacles, build self-confidence and live their best lives.”
Other key findings from the patient and provider surveys include:
- Patients with IBD are most concerned about how IBD affects their mental or emotional health-as well as how it limits their day-to-day life.
- Patients still need additional information on IBD treatment options and medications-and now increasingly they want additional information on mental health, compared to a similar survey conducted by AGA in 2017.
- A majority of providers believe they’ve given their patients the resources and information they need to manage their IBD, even though many also feel less equipped to treat patients emotionally than physically.
In addition to the disconnect between how patients and providers perceive the mental health aspects of IBD care, the survey also highlighted how different communities are impacted by the disease. For example, people of color with IBD, especially those in the Black community, were more likely to report that their IBD journey had been impacted by their personal identity compared to their white peers. Additionally, among all patients with IBD, women and those aged 18-39 were the least satisfied with their care. On the provider side, the biggest challenge noted when caring for patients with IBD was insurance authorization for medications.
About My IBD Life
The My IBD Life campaign was created to equip patients with the resources and tools they need to take back control of their lives. The materials were developed in partnership with people living with IBD and health care providers to address the unmet needs identified in the survey. Resources were developed in an accessible and health literate format and include personal stories on building emotional resilience, conversation guides, and 3D models to help patients visualize IBD in their bodies. Additionally, the site features tools to help patients to prepare for different life moments such as medical procedures, vacations, dating and intimacy, and navigating the workplace.
Patients and providers can visit the My IBD Life website, www.MyIBDLife.org, to view, download and interact with the new resources.
The campaign is supported by an independent grant from Bristol Myers Squibb.