INFLAMMATORY BOWEL DISEASE (IBD) COMMUNITY PREFERENCES FOR PSYCHOSOCIAL SUPPORT: THE ROLE AND SCOPE OF PEER SUPPORT FOR YOUTH WITH IBD

Abstract

Abstract INTRODUCTION Youth with inflammatory bowel diseases (IBD) experience psychosocial challenges which can negatively impact their body image, self-efficacy, IBD symptoms, and risk of disease recurrence. Peer support programs have high desirability amongst IBD patients and can improve disease management skills, self-efficacy, and mental health generally. Existing peer support programs vary, ranging from one-on-one peer coaching to professionally-led support groups to IBD summer camps. However, there is limited research identifying best practices for peer support in IBD. Community-based participatory research (CBPR) is a framework that centers patient voices in all phases of research, providing an opportunity to equitably represent patient preferences in the development of peer support programs. METHODS Our mixed-methods community survey was disseminated across the US to adults eighteen or older with IBD via patient organizations. This survey assessed patient preferences for a peer support program, including structure (e.g., support group, 1:1 mentor, group activities) and program topics (e.g., body image, social life, medical care). Participants ranked these on a 5-point Likert scale (from “Not at all important” to “Extremely important”) and also had an open-ended opportunity to provide other topic suggestions. Given our CBPR approach, we recruited a Patient Advisory Board (PAB), composed of adults diagnosed with IBD in childhood, and conducted one-on-one interviews to assess patient perspectives of the survey results. RESULTS Our sample included 77 participants (mean age 29, 39.5% with ulcerative colitis, 60.5% with Crohn’s disease). Participants ranked doing non-IBD activities (e.g., games, meals) as quite a bit important, while IBD activities (e.g., IBD comic book) were ranked moderately important. PAB members emphasized that the strength of a patient-led support program is the shared experience and “normalcy” of having IBD, and that limiting a program to IBD activities wouldn’t allow for spontaneous conversation and trust-building. The average ranking of all topics surveyed fell between “extremely important” to “quite a bit important.” In order of importance, topics included navigating social life and mental health, increasing independence while growing older, planning for the future, communicating with the healthcare team, disclosure to friends, navigating school, body image, medical management, and nutrition. Themes suggested by participants included sexual intimacy, fertility, and advocacy. PAB members emphasized the role of peer support interventions as complementary to medical care, and specifically, how peer mentorship can allow for ‘real world’ examples of navigating life with IBD, outside traditional topics discussed in medical appointments. We will use this mixed-methods data to inform our design of a novel IBD peer support program.