Evidence map›Paper›PMID 33218361›Full record

ArticleHealth and quality of life outcomes2020

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

Samuel O Adegbola, Lesley Dibley, Kapil Sahnan, Tiffany Wade, Azmina Verjee, Rachel Sawyer, Sameer Mannick, Damian McCluskey, Nuha Yassin, Robin K S Phillips and 3 more

Open access · goldAbstract read
In one paragraph

Article in Health and quality of life outcomes, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 63 papers, 7 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
63citing papers in PubMed, 7 pooled it
9.0field-weighted citation impact, top 1% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

63 citing papers in PubMed, 7 syntheses or guidelines pooled it, 102 citations in OpenAlex.

  1. Perianal fistulizing Crohn's disease: Clinical practice update from Colitis and Crohn's Foundation (India).Indian journal of gastroenterology : official journal of the Indian Society of Gastroenterology · 2026
    Guideline
  2. Pooled it
  3. Pooled it
  4. Pooled it
  5. Pooled it
  6. Pooled it
  7. Pooled it
  8. Trial
  9. Article
  10. Review
  11. Exclusive enteral nutrition improves radiological outcomes in adults with perianal fistulizing Crohn's disease: A real-world retrospective cohort study.Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition · 2026
    Article
  12. Article
  13. Article
  14. Article
  15. Article
  16. Review
  17. Magnetic resonance imaging to differentiate between Crohn's disease-associated and cryptoglandular perianal fistula.Indian journal of gastroenterology : official journal of the Indian Society of Gastroenterology · 2026
    Article
  18. Article
  19. Article
  20. Article

3 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors at 6 institutions in 1 country.

Samuel O AdegbolaRobin Phillips Fistula Research Unit, St Mark's Hospital and Academic Institute, Watford Road, Harrow, HA1 3UJ, Middlesex, UK. samadeg@doctors.net.uk.ORCID http://orcid.org/0000-0003-2522-3895
Lesley DibleyFaculty of Education, Health and Human Sciences, University of Greenwich, London, UK.
Kapil SahnanRobin Phillips Fistula Research Unit, St Mark's Hospital and Academic Institute, Watford Road, Harrow, HA1 3UJ, Middlesex, UK.
Tiffany WadeFlorence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College, London, UK.
Azmina VerjeeCAF-QoL Patient Representative, London, UK.
Rachel SawyerCAF-QoL Patient Representative, London, UK.
Sameer MannickCAF-QoL Patient Representative, London, UK.
Damian McCluskeyCAF-QoL Patient Representative, London, UK.
Nuha YassinRobin Phillips Fistula Research Unit, St Mark's Hospital and Academic Institute, Watford Road, Harrow, HA1 3UJ, Middlesex, UK.
Robin K S PhillipsRobin Phillips Fistula Research Unit, St Mark's Hospital and Academic Institute, Watford Road, Harrow, HA1 3UJ, Middlesex, UK.
Philip J TozerRobin Phillips Fistula Research Unit, St Mark's Hospital and Academic Institute, Watford Road, Harrow, HA1 3UJ, Middlesex, UK.
Christine NortonFlorence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College, London, UK.
Ailsa L HartRobin Phillips Fistula Research Unit, St Mark's Hospital and Academic Institute, Watford Road, Harrow, HA1 3UJ, Middlesex, UK.
Catholic Agency for Overseas Development · GBSt Mary's Hospital · GBKing's College London · GBSt Mark's Hospital · GBSt Mary's Hospital · GBUniversity of Greenwich · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPerianal 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.

methodsThis 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.

resultsTwelve 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.

conclusionCrohn'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.

Indexed as

Cost of IllnessPatient Reported Outcome MeasuresQuality of LifeAdolescentAdultCrohn DiseaseFemaleHumansMaleMiddle AgedQualitative ResearchRectal FistulaYoung AdultCrohn’s anal fistulaPatient reported outcomesQuality of life

Identifiers

PMID33218361
PMCPMC7678264
OpenAlexW3103911434

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.