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. 2024 Oct;69(10):3690-3700.
doi: 10.1007/s10620-024-08633-0. Epub 2024 Sep 18.

Understanding the Perspectives and Experiences of Patients with Acute Severe Ulcerative Colitis in the Hospital: A Qualitative Analysis

Dustin Romain  1 , Charlotte Larson  1 , Priya Kathuria  1 , Daniel Aintabi  2 , Nicholas Tedesco  1   3 , Queen Saunyama  1   3 , Melissa DeJonckheere  4   5 , Shrinivas Bishu  1   3 , Shirley Cohen-Mekelburg  1   3   5   6 , Peter D R Higgins  1   3 , Jeffrey A Berinstein  7   8   9
Affiliations

Understanding the Perspectives and Experiences of Patients with Acute Severe Ulcerative Colitis in the Hospital: A Qualitative Analysis

Dustin Romain et al. Dig Dis Sci. 2024 Oct.

Abstract

Introduction: Acute severe ulcerative colitis (ASUC) is a life-treating presentation of ulcerative colitis (UC) that requires prompt initiation of treatment to avoid complication. Unfortunately, outcomes for ASUC are suboptimal, with as many as 20-30% of patients requiring colectomy. This can be challenging for patients and highlights the need to understand patient experiences and perspectives navigating ASUC.

Methods: A qualitative descriptive study utilizing semi-structured interviews was conducted to understand perspectives and experiences of patients navigating ASUC. Adult patients hospitalized for ASUC between January 2017 and March 2024 were eligible. Interviews were conducted both retrospectively among patients with a recent hospitalization and prospectively among patients within 24 h of hospitalization for ASUC. Interviews were analyzed using a well-established hybrid inductive-deductive approach.

Results: Thirty-four patients (44.2% response rate) hospitalized for ASUC were interviewed. Hybrid thematic analysis uncovered five major themes: (1) the pervasive impact of UC on QoL and mental health, (2) challenges associated with navigating uncertainty, (3) prioritizing colon preservation, (4) bridging the divide between outpatient expectations and inpatient realities, and (5) balancing rapid symptom improvement with steroid safety. Our findings advocate for transparent approach to care, emphasizing the need for effective communication, education, and better alignment with patient values and expectations.

Conclusion: Five key themes were identified, each with significant implications for developing a more patient-centered approach to ASUC care. These themes captured meaningful insight into patient perceptions and experiences, identifying multiple areas for actionable interventions to improve care.

Keywords: Acute severe ulcerative colitis; Colectomy; Inflammatory bowel disease; Ulcerative colitis.

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References

    1. Chang JT, Hays RD, Shekelle PG et al. Patients’ global ratings of their health care are not associated with the technical quality of their care. Ann Intern Med 2006;144:665–672. https://doi.org/10.7326/0003-4819-144-9-200605020-00010 . - DOI - PubMed
    1. Bartlett EE, Grayson M, Barker R, Levine DM, Golden A, Libber S. The effects of physician communications skills on patient satisfaction; recall, and adherence. J Chronic Dis 1984;37:755–764. https://doi.org/10.1016/0021-9681(84)90044-4 . - DOI - PubMed
    1. Rubin DT, Ananthakrishnan AN, Siegel CA, Sauer BG, Long MD. ACG Clinical Guideline: Ulcerative Colitis in Adults. Official journal of the American College of Gastroenterology ACG 2019;114:384. https://doi.org/10.14309/ajg.0000000000000152 . - DOI
    1. Mao EJ, Hazlewood GS, Kaplan GG, Peyrin-Biroulet L, Ananthakrishnan AN. Systematic review with meta-analysis: comparative efficacy of immunosuppressants and biologics for reducing hospitalisation and surgery in Crohn’s disease and ulcerative colitis. Aliment Pharmacol Ther 2017;45:3–13. https://doi.org/10.1111/apt.13847 . - DOI - PubMed
    1. Koliani-Pace JL, Singh S, Luo M et al. Changes in Vedolizumab Utilization Across US Academic Centers and Community Practice Are Associated With Improved Effectiveness and Disease Outcomes. Inflamm Bowel Dis 2019;25:1854–1861. https://doi.org/10.1093/ibd/izz071 . - DOI - PubMed - PMC

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