Experiences and perceptions of IBD-related psychological distress in persons living with IBD

Abstract Background IBD-related psychological distress (IBD-PD) refers to the emotional impact of IBD and is associated with increased IBD activity. The inability to provide high-quality, person-centred care for IBD-PD that is proportional to clinical need is a significant healthcare gap in the Canadian healthcare system. The aim of this study was to generate stakeholder-derived data about patient experiences with IBD-PD in Nova Scotia, Canada. Methods Virtual semi-structured interviews took place between October 2021 and March 2022. The interview script was developed iteratively with researchers, IBD care providers, and patient research partners. Questions were designed to assess perceptions and experiences with IBD-PD. Adult IBD patients were recruited from IBD clinics. Using thematic analysis, codes were generated to identify themes. Results Nineteen individuals were approached to participate. The total number of participants recruited and enrolled was 14. The mean participant age was 37.6 years (range 23-57) with 57.1% as female (8/14). The following themes emerged: (1) There are specific triggers for IBD-PD such as hospital settings, social isolation, and stress (2) Times in a patients journey that are psychologically distressing include: initial diagnosis, transitions to new medication or new treatment, and surgery (3) some participants achieved psychological wellbeing while living with IBD and reported their experience gave them new perspective on life and more empathy and compassion. Conclusions There are many triggers for IBD-PD and timepoints associated with IBD-PD throughout a patient’s disease course. It is important to understand IBD-PD from the patient perspective, so that future interventions meet patient-specific needs.