Patients' Preference and Acceptability of Inflammatory Bowel Diseases Self-Help Interventions: CORE Study (Confidence Optimization through Resources for Education, Engagement, and Empowerment)

Background:
Patients with chronic diseases often seek health information and self-management tools. It is not known the type of self-help tools that patients with IBD prefer to use, how the tools are used, and the challenges they encounter with self-help tools.
Methods:
CORE (Confidence Optimization through Resources for Education, Engagement, and Empowerment) was a prospective mixed-methods study that evaluated patients’ utilization of 4 IBD self-help resources at 5 IBD practices participating in the Crohn’s & Colitis Foundation’s IBD Qorus Learning Health System from Feb 2023 to May 2024. Participants received e-surveys at weeks 0, 6, and 12. At week 0, patients had the option to select 1 or more IBD-specific resources: 1) a cognitive behavioral therapy (CBT) workbook, 2) smart apps (MyGutTM, track symptoms; We Can’t Wait, access community restrooms), 3) peer mentor, and 4) helpline (email, call, or online chat with an IBD information specialist). We assessed the acceptability and feasibility using the Acceptability of Implementation Measure (AIM) and the Feasibility of Implementation Measure (FIM), with higher scores being more favorable. We performed inductive thematic analysis on patients’ free-text comments about the resources, including the barriers they faced, coded by 2 researchers with high inter-rater reliability (kappa statistic > 0.75).
Results:
468 patients participated (36% male, 58% with Crohn’s disease, and 66% with clinically active disease). IBD self-help resources (average 2.4 resources) were chosen by 91% (427/468). On follow-up, 78% of respondents (89/114) ultimately used at least 1 resource: 33% CBT workbook, 33% smart apps, 21% helpline, and 8% peer mentor. All resources were rated as acceptable (rating average 3.8/5 on the AIM scale) and feasible to use (average 3.8/5 on the FIM scale), with the smart apps rating the highest (average 4.2/5 on both scales). Of the patients who used the resources, the average monthly use of resources varied (helpline 1.4 times/month, We Can’t Wait 1.6, peer mentor 3.0, MyGutTM app 3.5). One-third (38/114) of the patients read the CBT workbook, most read the first 3 chapters (i.e., understanding IBD, stress and the gut, and relaxation training and physical activity) and 7 (6%) read the whole book (12 chapters, 178 pages). 53 participants submitted 90 free-text comments. While 1 in 5 (21%) patients expressed appreciation of the resources, the remainder of the comments were related to barriers, including difficulty accessing the resource (38% of patients), lack of time (19%), and irrelevant content (17%). Others expressed confusion when using the resource, the resources not meeting their expectations, or suggested a new resource.
Conclusions:
Patients with IBD are highly interested in self-help resources to help manage IBD. Most patients chose to use a smart app to track symptoms or read a cognitive behavioral workbook to help with the psychosocial aspects of living with IBD. Difficulty with accessing the resources and the lack of time are barriers to using self-help resources. Further research into the types of self-help resources and their impact on symptom management, quality of life, and healthcare utilization are important for providing holistic care for IBD.