Inflammatory bowel disease (IBD) is a crowded drug market with plenty of treatment options across the two forms of the gastrointestinal disease: ulcerative colitis and Crohn’s disease. But one important aspect that pharmaceuticals can’t reach is the power of community, as Johnson & Johnson details in its newest IBD-focused white paper.
The chronic disease is often described as an “invisible illness” due to symptoms that may not always be apparent to others. J&J, which markets popular IBD drugs like Tremfya and the older Stelara, has long worked to bring the often-unseen physical and psychosocial burdens of the disease out of the shadows with its own IBD support community, dubbed the IBD Social Circle.
The group was established in 2014 to turn “lived experience into resources” through an inclusive community of patient advocates, caregivers and healthcare professionals dedicated to the cause, per its website.
Still, not much qualitative research exists to track the importance of community for IBD patients. That’s why J&J commissioned a Harris Poll survey among 511 U.S. adults with IBD, resulting in a white paper of its findings that includes one-on-one interviews with advocates and experts.
Although more research is still needed to confirm the new insights, according to J&J, the findings allow the company to further pull back the curtain on the unseen burden of the complex condition that impacts an estimated 6.8 million people around the world.
Patients with IBD typically require frequent medical visits for testing and disease monitoring, often through invasive measures such as colonoscopies. While no cure exists, maintenance therapy can result in clinical remission. However, as J&J pointed out in the paper, many of the medical definitions of “remission” don’t account for the psychosocial impacts of the disease.
“IBD ripped me apart from the inside out,” IBD Social Circle advocate Tina Aswani-Omprakash said in the report. “People don’t tell you that when you get diagnosed.”
According to J&J's survey, people with IBD often feel isolated within their individual, local and societal communities. Of the respondents, 85% reported feeling misunderstood, while 78% said they feel isolated, and 80% find it difficult to socially engage with other people due to their disease. Depression and anxiety are common mental health conditions associated with IBD, even for those in remission.
The impacts of the disease bleed into several areas of life, with 78% of IBD patients surveyed sharing that their IBD has had a negative effect on their confidence at work or school. Some have even lost their jobs specifically due to the disease, J&J found, as unexpected flare-ups can make it difficult to commit to future work tasks.
Patient communities can help combat common IBD misinformation and offer real-world advice to help others manage their disease. According to the survey, 95% of those with IBD are looking for more IBD information and resources beyond what their physician provides them.
The benefits of these communities are tangible. As J&J found, 44% of those surveyed who have engaged with patient communities reported feeling improvements in their mental health and well-being, while nearly 40% discovered ways to improve their physical well-being.
And, with disease-related barriers often keeping them from participating in in-person communities, IBD patients have long found a home on the internet, joining online communities to access 24/7 support.
It should be noted, however, that challenges in accessing online support may have race-based discrepancies. Although little research exists on this occurrence in IBD specifically, the company pointed out that previous studies have shown that people of color are generally less likely to seek out social support due to cultural stigma.
Additionally, not everyone who wishes to join a support group is able to, with 68% of those polled in J&J’s survey expressing that although they want to participate in an online community, they don’t have access to the technology needed to do so. Others may not feel as empowered to participate due to where they are in their disease journey, the company suggested.
That being said, broader community support can be improved through action by key stakeholders. Healthcare teams should be mindful to treat “the whole patient” and ask patients for updates on their mental condition, with information on community support groups and culturally conscious resources on hand, J&J said.
The general public, meanwhile, “must learn to be more empathetic to those living with invisible illnesses like IBD, where the impact and severity may not be immediately apparent,” the company noted.
Those within the IBD community can help the cause as well: “By sharing lived experiences and being open with neighbors, acquaintances, and friends, we can begin to normalize the IBD experience at the societal level,” J&J wrote in the report.