A Study of Patient Concerns in the Modern Therapeutic Era of Inflammatory Bowel Disease

Background Patient concerns and preferences are important in the management of inflammatory bowel disease (IBD: Crohn's disease [CD], ulcerative colitis). In the absence of contemporary data, we aimed to determine patient concerns and preferences and establish if there are demographic or disease-related differences.Methods We surveyed patients with IBD at Massachusetts General Hospital between July and September 2023. The Rating Form of Inflammatory Bowel Disease Patient Concerns (RFIPC) and a set of supplemental questions rated on a visual analog scale (0-100 mm) were administered to patients and compared by age, disease type, sex, and surgery status. Additionally, a survey administered to treating providers gathered insight into the difference between patient and provider perceptions of concerns.Results A total of 350 patients and 30 providers completed the survey. The mean age was 47 years; 50% were female, 49% had CD, and 80% were on advanced IBD therapy. Effects of medication (median = 54), energy level (median = 53), and having an ostomy bag (median = 52) were rated highest by patients. Older patients rated most disease complication and treatment-related concerns similar to younger adults; those aged 35-59 years had the greatest level of concern for most questions. Sex, disease activity, and prior surgical history also impacted patients' concerns. Providers perceived patients' worries as higher than those rated by patients themselves.Conclusions A shared decision-making model targeting the achievement of disease remission and addressing concerns rated highly by patients is important to meet the goal of care for patients with IBD. The highest rated concerns among patients with inflammatory bowel disease were needing an ostomy, energy level, and concern with medications. Older patients had a similar level of disease-related concerns as younger patients. There has been no secular decrease in patient concerns.