Improving Physical and Psychological Disability in Crohn’s and Colitis

Introduction: Inflammatory bowel disease (IBD), encompassing Crohn’s disease (CD) and ulcerative colitis (UC), is a life-long, debilitating disease which is increasing in prevalence globally. The concept of IBD-related disability is gaining traction as a treatment endpoint and brings together a number of physical and psychological issues that can affect patients with IBD including pain, regulation of defaecation, fatigue, mood disorders, body image and work productivity. The aim of this thesis was to focus on improving disability in patients with IBD. Firstly we validated the recently developed IBD disability index (IBD-DI), investigated its responsiveness over time and examined its association with long-term disease activity and need for treatment escalation. Secondly, we investigated the impact of the photographic material contained in IBD patient education leaflets on young adults’ body image. Third, we examined the increased prescribing of thiopurine and biologic medications over time and the subsequent impact on surgical rates in Crohn’s disease. Finally, we evaluated patients’ satisfaction with telemedicine-delivered IBD care during the COVID-19 pandemic. Materials and methods: 329 patients recruited from the IBD clinic completed a survey that included the IBD-DI along with several psychosocial and economic measurement tools for validation. 107 subjects then repeated the same questionnaire a number of years later to evaluate the IBD-DI responsiveness to change over time. To examine the effect of photographic material on patients’ body image, 121 young adults with IBD were randomised to read an IBD information booklet containing either photographic images of attractive, carefree appearing individuals or similar cartoon images. We performed a longitudinal study on 1,322 patients diagnosed with Crohn’s disease between 1989 and 2018 to determine the cumulative probability of immunomodulator use, biologic use, first and second surgery. Finally, we used a mixed methodology study to evaluate patient’s satisfaction with telemedicine-delivered IBD care. Results: 1) We validated the 14-item IBD-DI and found it to be a reliable, responsive measure of disability which predicted long-term disease activity and need for treatment escalation. 2) We found that photographs of attractive, carefree appearing young adults neither did not significantly affect body image dissatisfaction, general mood or information uptake in IBD subjects. 3) Major first and second surgical rates in Crohn’s disease have declined substantially over the past 30 years, particularly in the last decade, mirroring increasing immunomodulator and biologic use. 4) Patients expressed high levels of satisfaction with telemedicine-delivered IBD clinics, with most wishing to continue their use. Personality was the most important variable affecting clinic satisfaction, in addition to socioeconomic and disease-related factors. Conclusion: We have made a significant, original contribution to the management of IBD-related disability across a number of domains. We have validated the 14-item IBD-DI against a broad range of psychosocial and economic variables in an English-speaking hospital population for the first time. Our data on its responsiveness to change over time and its longitudinal association with disease activity and treatment needs are novel. We performed the first randomised controlled trial to assess the impact of the content of patient information leaflets on body image, knowledge intake and mood in young patients with chronic disease. Our study examining temporal trends in biologic and immunomodulator use in Crohn’s disease and associated changes in surgical rates represents one of the most up to date datasets available on this topic while our study on telemedicine-delivered virtual IBD clinics has knock-on implications for future care delivery. We hope that these findings will help to improve IBD-related disability going forward.