Barriers and opportunities to improve shared decision-making for patients with ulcerative colitis: a qualitative...

Shared decision-making (SDM) for ulcerative colitis (UC) is complex and often occurs under challenging clinical circumstances. Although SDM can enhance patient-centered care, there is limited understanding of how patients experience this process, particularly across diverse populations. This study aimed to explore barriers and facilitators to SDM among patients who underwent surgery for UC.

This study was a multisite qualitative study using semistructured interviews with patients with UC who underwent surgery. Participants were recruited through inflammatory bowel disease patient registries and an online UC support group. Interviews explored preoperative counseling, perioperative support, perceived choice, and opportunities for improved care. Responses were analyzed using deductive and inductive methods, and descriptive statistics were applied to characterize the cohort.

A total of 26 participants were interviewed: 23% Black, 65% White, and 12% other. Many reported feeling that they had little or no choice in undergoing surgery. Facilitators of SDM included early introduction of surgery, strong surgeon rapport, and strong social support. Barriers included poor surgeon rapport, lack of social support, fear of an ostomy, and financial stress. In addition, participants emphasized the importance of transparency and preparation for postoperative complications.

Participants valued honest, collaborative conversations with their surgeons about surgical options for UC. Despite diverse backgrounds, a consistent theme was the desire for more agency and better preparation. Implementing standardized SDM tools, such as patient decision aids, may improve communication, patient satisfaction, and readiness for surgery.