Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2020 Nov 20;18(1):370.
doi: 10.1186/s12955-020-01622-7.

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

Samuel O Adegbola  1   2 , Lesley Dibley  3 , Kapil Sahnan  4   5 , Tiffany Wade  6 , Azmina Verjee  7 , Rachel Sawyer  7 , Sameer Mannick  7 , Damian McCluskey  7 , Nuha Yassin  4 , Robin K S Phillips  4   5 , Philip J Tozer  4   5 , Christine Norton  6 , Ailsa L Hart  4   5
Affiliations

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

Samuel O Adegbola et al. Health Qual Life Outcomes. .

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.

Keywords: Crohn’s anal fistula; Patient reported outcomes; Quality of life.

PubMed Disclaimer

Conflict of interest statement

KS, PJT and SOA have received honoraria from Takeda for sitting on an advisory board. PJT has received honoraria from Takeda for speaking at a symposium. Lesley Dibley: speaker’s fees from Janssen and AbbVie; consultancy fees from GL Assessments. Christine Norton: speaker’s fees from Takeda, Tillots Pharma and Ferring Pharmaceuticals. ALH has served as a consultant, advisory board member or speaker for AbbVie, atlantic, Bristol-Myers Squibb, Celltrion, Falk, Ferring, Janssen, MSD, Napp Pharmaceuticals, Pfizer, Pharmacosmos, Shire and Takeda. She also serves on the global Steering committee for Genentech.

Figures

FIG. 1
FIG. 1
– Thematic depiction of the experiences of living with Crohn’s anal fistula: Themes are located in the central squares with the subthemes in the peripheral squares
See this image and copyright information in PMC

References

    1. Ardizzone S, Porro GB. Perianal Crohn’s disease: overview. Dig Liver Dis. 2007;39(10):957–958. doi: 10.1016/j.dld.2007.07.152. - DOI - PubMed
    1. Economou M, Zambeli E, Michopoulos S. Incidence and prevalence of Crohn’s disease and its etiological influences. Ann Gastroenterol. 2009;22(3):158–167.
    1. Tozer P, Ng SC, Siddiqui MR, et al. Long-term MRI-guided combined anti-TNF-α and thiopurine therapy for Crohn’s perianal fistulas. Inflamm Bowel Dis. 2012;18(10):1825–1834. doi: 10.1002/ibd.21940. - DOI - PubMed
    1. Irvine EJ. Usual therapy improves perianal Crohn’s disease as measured by a new disease activity index. McMaster IBD Study Group. J Clin Gastroenterol. 1995;20(1):27–32. doi: 10.1097/00004836-199501000-00008. - DOI - PubMed
    1. Yassin N, Dibley L, Nachiappan S, Phillips R, Hart A, Norton C. PTU-201 living with anal fistulae. Gut. 2015;64(Suppl 1):A151.2–A151. doi: 10.1136/gutjnl-2015-309861.316. - DOI