Inflammatory bowel disease patients’ expectations of care: Insights from a qualitative study

Abstract

Background: The relationship with the treating gastroenterologist has been shown to significantly influence the quality of life of patients with IBD (Inflammatory Bowel Disease). Still, the expectations of patients have not been studied in detail. This study aimed to explore the messages and recommendations of IBD patients towards their gastroenterologists who treat them. Methods: This qualitative study was conducted using the DIPEx method developed by the Health Experiences Research Group at Oxford University. Semi-structured interviews with 36 participants (19 with Crohn’s disease and 17 with ulcerative colitis) were analysed using thematic analysis. Results: Three main areas emerged as relevant for patients: doctors’ expertise, patient-physician relationships, and the organisation of the healthcare system. Participants underscored the importance of comprehensive information, symptom recognition, exceptional care, and addressing outcome disparities by their treating physicians. Patient-centeredness, including dignified treatment, collaborative management of embarrassment, and trust, was mentioned as crucial for a good patient-physician relationship. The patients stressed the importance of sufficient time for care and the incorporation of mental health interventions. They emphasised professionalism, expertise, and friendly rapport as crucial for building trust in treating the unpredictable nature of IBD. The study also highlights the systemic impact of these interactions on healthcare systems. Conclusions: Patients actively engaged in their treatment bring novel perspectives, underscoring the value of a collaborative, respectful, and patient-physician dynamic. The implementation of this approach requires systemic healthcare shifts. This qualitative study on patient expectations underscores factors for a robust patient-physician bond, including gastroenterologists’ expertise, personalised care, and adequate time provision.