Diverticulitis Feels Like a Life Sentence

Abstract

INTRODUCTION: After an episode of acute diverticulitis, many patients experience chronic or recurrent symptoms that adversely affect their quality of life. Understanding these issues is key to improving clinical communication and patient-centered research. In this study, we aim to characterize elements of the patient experience with diverticulitis that patients feel are under-recognized. METHODS: We conducted a survey of members of diverticulitis support groups on Facebook from February through April 2020. Participants were invited to take an anonymous web survey in which participants were asked: “What would you like doctors and researchers to know about your experiences with diverticular disease?” All responses were evaluated by 2 coders (DS and DD) using thematic analysis. RESULTS: A total of 564 responses were analyzed and 3 consistent themes emerged: (1) Need for dietary recommendations; (2) Inconsistent information from providers; (3) Under-recognition of quality-of-life impact (Table). CONCLUSION: Patients with diverticulitis perceive a need for more detailed dietary recommendations, more consistent information from their providers, and better recognition of their quality-of-life issues. Future work should evaluate dietary intervention, improve patient education materials, and prioritize patient-reported outcomes. Understanding these experiences is key to developing strategies to improve patient-centered care. Table. - Theme Illustrative quote Diet Way more information on diet and what to look for and expect. More info on proper diet and eating options is desperately needed; an appointment with a nutritionist was VERY helpful for me. We need more information on what is best and safe to eat. Information So much confusion because of a lack of reliable information and contradictory information given by the two doctors I’ve seen. The lack of solid information about the disease and conflicting information. Ask five different doctors the same questions, you’ll get five different answers. Quality of Life I’d like doctors to be fully aware of just how debilitating and painful this disease really is...it has truly robbed me of my life. It is so disruptive. It makes me feel worthless as a mother and a partner. It is life changing and it feels like a life sentence. I would like them to not make me feel like it’s not a big deal as it is for all who suffer.