Abstract Background Stress significantly affects disease flares and quality of life in people with ulcerative colitis (UC), with over 25% experiencing symptoms of anxiety or depression irrespective of disease activity.1–3 However, there is limited research on the specific stressors introduced by a UC diagnosis. This study aimed to explore how stress is experienced following diagnosis and identify contributing factors. Methods Ten UK-based patients diagnosed with UC within the past six years (seven within the last year) participated in semi-structured online interviews exploring stress and coping during their first post-diagnosis year. Participants (7 female and 3 male; aged 16–76) were predominantly white (n = 9). All had elevated scores on Cohen’s Perceived Stress Scale prior to interview.4 The interviews were video-recorded and analysed using Interpretative Phenomenological Analysis to capture both shared and divergent aspects of their unique lived experiences.5 Results Analysis revealed a complex and evolving relationship between stress, resilience, and UC, captured in four themes: I. Rethinking health - Health became effortful and unpredictable, shaped by a tension between personal experience and others’ interpretations II. Rethinking identity - A lifelong diagnosis disrupted self-identity, social roles, and life plans, often leading to feelings of body estrangement III. Adapting life - Participants were compelled to adjust their behaviour and daily routines, acquire new knowledge and skills, and rely more on others IV. Dealing with complex emotions - Emotional and physical health were closely linked, with stress and worry heightening distress but also motivating efforts to conserve emotional energy and seek positive experiences Illustrative quotations for each theme are provided in Table 1. Conclusion These findings enhance understanding of the stressors introduced by a UC diagnosis and the process by which individuals respond. While participants developed personal resilience to stressors, the role of others (including healthcare professionals) was pivotal in either alleviating or exacerbating stress. There is a pressing need to improve emotional and practical support for people newly diagnosed with UC and their close networks. Crucially, the collective knowledge and lived experience of people with UC should be actively harnessed, not only to guide and support those newly diagnosed, but also to inform and improve clinical practice and wider support services. References: Black J, Sweeney L, Yuan Y, Singh H, Norton C, Czuber-Dochan W. Systematic review: the role of psychological stress in inflammatory bowel disease. Aliment Pharmacol Ther. 2022;56(8):1235-1249. doi:10.1111/apt.172022. Luo H, Sun Y, Li Y, et al. Perceived stress and inappropriate coping behaviors associated with poorer quality of life and prognosis in patients with ulcerative colitis. J Psychosom Res. 2018;113:66-71. doi:10.1016/j.jpsychores.2018.07.0133. Barberio B, Zamani M, Black CJ, Savarino EV, Ford AC. Prevalence of symptoms of anxiety and depression in patients with inflammatory bowel disease: a systematic review and meta-analysis. Lancet Gastroenterol Hepatol. 2021;6(5):359-370. doi:10.1016/S2468-1253(21)00014-54. Cohen S, Kamarck T, Mermelstein R. A Global Measure of Perceived Stress. J Health Soc Behav. 1983;24(4):385-396. doi:10.2307/21364045. Smith JA, Flowers P, Larkin M. Interpretative Phenomenological Analysis: Theory, Method and Research. SAGE; 2022. Conflict of interest: Black, Jacqueline: PhD sponsorship provided by Bowel Research UK Norton, Christine: Personal Fees: Janssen: lecture fee WebMD lecture fee Medscape symposium fee Merck Pharmaceuticals lecture fee Pfizer advisory board fee Sweeney, Louise: No conflict of interest Czuber-Dochan, Wladyslawa: Grant: National Institute of Health Research, Bristol Myers Squibb, and Crohn’s and Colitis UK Personal Fees: Dr Falk Pharma UK and PharmaCosmos
Black et al. (Thu,) studied this question.