Understanding the surgical experience for Black and White patients with inflammatory bowel disease (IBD): The importance of health literacy

Abstract

Background: Racial/ethnic disparities in outcomes exist for patients with inflammatory bowel disease (IBD) undergoing surgery. The underlying mechanism(s) remain unclear and patient perspectives are needed. We therefore aimed to characterize the surgical experience for Black and White IBD patients using qualitative methods.

Methods: Patients with IBD who had undergone surgery were recruited to same-race qualitative interviews. Semi-structured interviews explored barriers and facilitators to a positive or negative surgical experience. Transcripts were analyzed with NVivo 12 software.

Results: Six focus groups were conducted that included 10 Black and 17 White IBD participants. The mean age was 44.8 years (SD 13.2), 52% were male and 65% had Crohn's disease. Four themes emerged that most defined the surgical experience: the impact of the IBD diagnosis, the quality of provided information, disease management and the surgery itself. Within these themes, barriers to a positive surgical experience included inadequate personal knowledge of IBD, ineffective written and verbal communication, lack of a support system and complications after surgery. Both groups reported that information was provided inconsistently which led to unclear expectations of surgical outcomes.

Conclusions: Black and White patients with IBD have varied surgical experiences but all stressed the importance of accurate, trustworthy and understandable health information. These findings highlight the value of providing health literacy-sensitive care in surgery.

Keywords: Disparities; Health literacy; IBD; Outcomes; Surgery.