Identifying and Predicting the Goals and Concerns Prioritised by Individuals with Inflammatory Bowel Disease

Background and Aims: In order to provide high-quality care, providers need to understand their patients' goals and concerns. This study aims to identify and predict the goals and concerns prioritised by patients with inflammatory bowel disease [IBD] in the outpatient setting. Methods: Mixed-methods analysis was performed to identify the types, frequencies, and predictors of IBD patients' goals and concerns using 4873 surveys collected over 2016-2019 at 25 gastroenterology clinics across the USA participating in the Crohn's & Colitis Foundation's IBD Qorus Learning Health System. Results: Patients with IBD most often prioritised goals and concerns related to symptoms/disease activity [50%] and clinical course/management [20%], whereas psychosocial/quality of life [12%] and medication [6%] concerns were less frequent. Females (odds ratio [OR] 22.1, 95% confidence interval [CI] 5.3-91.5) and patients in clinical remission [OR 2.2, 95% CI 1.2-4.1] were more likely to prioritise family planning. Patients >60 years old [OR 3.1, 95% CI 1.5-6.5] and patients with active disease [OR 3.2, 95% CI 1.4-7.6] were more often concerned about travelling. Smokers were more often concerned about nutrition [OR 4.2, 95% CI 1.9-9.2]. Surgery was more often a concern of patients with perianal Crohn's disease [OR 2.1, 95% CI 1.2-3.5], active disease [OR 1.9, 95% CI 1.1-3.4], and those with recent hospitalisations [OR 2.5, 95% CI 1.2-5.4]. Conclusions: IBD patients prioritised the remission of physical symptoms as treatment goals and they were less frequently concerned about medications and their side effects. Patients' demographics, IBD characteristics, and health care utilisation patterns can predict specific types of concerns/goals.