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.