Living with cryptoglandular anal fistula: a qualitative investigation of the patient's experience through semi-structured patient interviews

Nusrat Iqbal,Stephanie O Breukink,Laith Alrubaiy,Ugo Grossi,Astrid J H M Machielsen,Gillian Kane,Rebecca Woodcock,Merel L Kimman,Phil J Tozer

doi:10.1007/s11136-022-03098-y

Abstract

PurposeCryptoglandular anal fistula continues to be a subject of extensive surgical research due to the lack of effective and enduring treatments, some of which incur risks to continence and quality of life. However, the patient experience of disease has seldom been reported. The aims of this study are to understand the impact of living with a fistula and the treatment outcomes that are valued by patients.MethodsPatients with cryptoglandular anal fistula were recruited using purposive sampling from two tertiary referral centres in the UK and the Netherlands. Patients underwent semi-structured interviews that were audio-recorded and transcribed verbatim. Dutch transcripts were translated into English and underwent independent, thematic analysis using open coding by two study team members to identify common themes and sub-themes.ResultsTwenty interviews were conducted before saturation was reached (11 male, median age 49, Interquartile range 39–55 years). Four broad themes emerged, covering the physical symptoms of fistula, the patient journey towards understanding the condition, life impact, and treatment. Several inter-related sub-themes were found, reflecting the extensive impact and adjustment that the disease entails.ConclusionThe impact of cryptoglandular anal fistula extends beyond the physical symptoms of pain and discharge, requires significant readjustment, and often negatively impacts psycho-social wellbeing. These aspects of disease should receive greater attention in future assessment of treatment and quality of life.

Highlights

An anal fistula is an abnormal epithelialised connection between the anal canal and the perianal skin, affecting 1–2 people per 10,000 per year [1]
When asked about the most important quality of life (QoL) issues associated with fistula treatment, patients were more likely to prioritise factors relating to psycho-social wellbeing [8]
Several studies have demonstrated that worsening faecal continence after anal fistula surgery results in deterioration of QoL scores [4, 7], others have demonstrated that patients treated for simple fistula did not show any worsening of their Faecal Incontinence Quality of Life (FIQL) scores despite showing minor worsening of continence [10]

Summary

Introduction

An anal fistula is an abnormal epithelialised connection between the anal canal and the perianal skin, affecting 1–2 people per 10,000 per year [1]. Most cases occur due to an infection of the mucus glands lining the anal canal, which discharges via the perianal skin. Most of the research into cryptoglandular anal fistula is concerned with evaluating the physiological and clinical outcomes of surgical treatment [3] including healing and continence. Patients typically experience perianal pain and ongoing discharge from the external opening, in addition to infective episodes and the development of recurrent abscesses requiring surgical drainage. These symptoms drive a significant QoL burden and require considerable practical adjustments [4,5,6,7]. Surgical treatment as been demonstrated to improve QoL [6], even in patients who see a minor deterioration in continence as a result [9, 10]

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