Background In patients with inflammatory bowel disease (IBD), failure to adhere to treatment regimens due to insurance issues can lead to disease complications. Our aim was to examine patients’ perceptions of the impact of insurance issues on their health. Methods Twenty-nine patients with IBD at a large US academic center and an insurance issue participated in a mixed-methods study. Retrospective chart review and an online questionnaire were completed to collect demographic information, IBD characteristics, and validated resilience scores. Semistructured interviews were completed for insurance experiences, which were coded independently by 2 coders for themes. Results Twenty-nine patients completed the interview, and 24 completed the online survey. Sixteen had Crohn’s disease, 13 had ulcerative colitis, and 66% were female. The most common insurance issue was lapsed insurance. Many experienced physical consequences, with 58% having flares, 14% undergoing surgery, and 14% developing antibodies. All emotional responses were negative, with the majority feeling stressed (38%). Providers were uninformed of insurance issues in 28% of cases. When asked about perceived resilience, 41% felt incapable of managing the situation, and 45% gave up trying to solve the problem. When asked how to improve going forward, 38% requested an easily accessible advocate to guide them. Conclusions A large proportion of our cohort chose not to inform their provider, felt incapable of managing on their own, and gave up on resolving their insurance issue. This highlights the need to consider restructuring the insurance system, to identify those at risk for insurance issues, and to make advocates available to avoid devastating consequences.

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