Burden of disease and adaptation to life in patients with Crohn's perianal fistula: a qualitative exploration

Title: Burden of disease and adaptation to life in patients with Crohn's perianal fistula: a qualitative exploration
Authors: Adegbola, SO
Dibley, L
Sahnan, K
Wade, T
Verjee, A
Sawyer, R
Mannick, S
McCluskey, D
Yassin, N
Phillips, RKS
Tozer, PJ
Norton, C
Hart, AL
Item Type: Journal Article
Abstract: Background Perianal fistulas are a challenging manifestation of Crohn’s disease. Best medical and surgical therapy results in only about a third of patients remaining in remission at one year on maintenance treatment and sustained healing is often elusive. There is little published data on patient perspective of living with the condition or coping strategies in the face of non-curative/non-definitive treatment. We aimed to understand the experience of living with perianal fistula(s) and their impact on quality of life and routine functioning. Methods This exploratory qualitative study used purposive sampling to recruit participants with current / previous diagnosis of Crohn’s anal fistulas, from national IBD / bowel disease charities. The “standards for reporting qualitative research” (SRQR) recommendations were followed. Unstructured individual face-to-face interviews were audio recorded, transcribed and analysed thematically. Early themes were reviewed by the study team including patient advocates, clinicians and qualitative researchers. Results Twelve interviews were conducted, achieving apparent data saturation. Three broad themes were uncovered: Burden of symptoms; Burden of treatment; and Impact on emotional, physical and social well-being. Each included several sub-themes, with considerable interplay between these. The impact of perianal fistula(s) on patients with CD is intense and wide reaching, negatively affecting intimate, close and social relationships. Fistulas cause losses in life and work-related opportunities, and treatments can be difficult to tolerate. Conclusion Crohn’s perianal fistulas exert a heavy negative physical and emotional impact on patients. These findings will inform development of a patient reported outcome measure to assess treatment effectiveness and quality of life for patients living with this challenging condition.
Issue Date: 20-Dec-2020
Date of Acceptance: 6-Nov-2020
URI: http://hdl.handle.net/10044/1/86594
DOI: 10.1186/s12955-020-01622-7
ISSN: 1477-7525
Publisher: BioMed Central
Start Page: 1
End Page: 13
Journal / Book Title: Health and Quality of Life Outcomes
Volume: 18
Issue: 1
Copyright Statement: © The Author(s) 2020. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativeco mmons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Keywords: Science & Technology
Life Sciences & Biomedicine
Health Care Sciences & Services
Health Policy & Services
Crohn&#8217
s anal fistula
Patient reported outcomes
Quality of life
REPORTED OUTCOME MEASURES
THERAPY
Crohn’s anal fistula
Patient reported outcomes
Quality of life
Science & Technology
Life Sciences & Biomedicine
Health Care Sciences & Services
Health Policy & Services
Crohn&#8217
s anal fistula
Patient reported outcomes
Quality of life
REPORTED OUTCOME MEASURES
THERAPY
Health Policy & Services
1117 Public Health and Health Services
Publication Status: Published
Article Number: ARTN 370
Online Publication Date: 2020-11-20
Appears in Collections:Department of Surgery and Cancer



This item is licensed under a Creative Commons License Creative Commons