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

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.

Impact on Quality of Life of Seton Placing in Perianal Crohn's Disease

“…Often, a seton is placed to provide a continuous drainage during anti-TNF-alpha therapy to prevent septic complications, and the constant presence of this device might somehow influence the perception of the quality of life of these patients. However, despite CD perianal disease has a heavy negative physical and emotional burden on patients ( 3 ), currently, there are relatively few studies assessing quality of life of these patients and even less specifically in relation to a seton placing. There is only a disease-specific questionnaire specifically dedicated to this condition, the CAF-QoL ( 4 ), and this is a sort of index of the relative paucity of information about quality of life in patients with perianal CD.…”

“…Perianal Crohn's disease is associated with perianal pain, discharge, and permanent local anatomical alterations. It results as disabling conditions characterized by a greatly diminished quality of life, directly affecting patients' physical, psychological, and sexual aspects of life ( 2 , 3 ). However, despite Crohn's perianal fistulas exerting a heavy negative physical and emotional impact on patients ( 4 ), currently, there is almost no specific patient-derived quality-of-life tools to measure response to treatment.…”

Journey through Crohn’s Disease Complication: From Fistula Formation to Future Therapies

“…Although CD treatment is constantly improved by new therapeutic tools, the optimization of existent therapies and the adoption of a multidisciplinary approach to fistula management remains a clinical challenge [ 4 , 5 ]. This is mainly due to a minority of patients achieving remission and sometimes due to the lack of availability of a few specific therapies and feasibility of surgical techniques [ 6 ].…”

“…As a consequence, patients commonly experience a negative impact on quality of life, including intimate and social relationships and a frequent need for hospital admissions and medical observations [ 6 ].…”

Approach to medical therapy in perianal Crohn’s disease

“…It remains a difficult condition to treat, with relapses occurring frequently, and it is associated with a higher rate of hospitalization and surgery compared to individuals with Crohn’s disease without perianal disease[ 4 - 6 ]. Perianal Crohn’s disease is also associated with a significant burden on quality of life with far reaching consequences on the well-being of an individual, including affecting social relationships and work-related opportunities[ 7 ]. Treatment often requires multimodal therapy with surgical treatment and systemic medical therapy used in combination, and this has been shown to be more efficacious than either strategy alone[ 8 , 9 ].…”