N002 A qualitative exploration into experiences of living with Crohn’s anal fistula

Abstract

Conclusions: The questionnaire can be considered as feasible. This is an important step in the direction of evaluating health care in a person-centred way, as health care organisations strive for a person-centred approach. Further testing is suggested to assess if the QoC-IBD can be used to evaluate care and areas of improvement in health care for persons living with IBD. References 1. O'Connor M, Bager P, Duncan J, et al. N-ECCO Consensus statements on the European nursing roles in caring for patients with Crohn's disease or ulcerative colitis. J Crohns Colitis 2013;7:744-64. 2. Kappelman MD, Palmer L, Boyle BM, et al. Quality of care in inflammatory bowel disease: a review and discussion. Inflamm Bowel Dis 2010;16:125-33. 3. van der Eijk I, Stockbrugger R, Russel M. Influences of quality of care on quality of life in inflammatory bowel disease (IBD): literature review and studies planned. Eur J Int Med 2000;11:228-34. 4. Donabedian A. Evaluating the quality of medical care. Milbank Quart, 2005;83:691-729. Background: Crohn's perianal fistulas are challenging for clinicians and patients. Many do not respond to available treatments, and despite recommendations by a recent global consensus, 1 there are currently no specific patient-derived quality of life (QoL) tools to measure outcomes including response to treatment, in patients with perianal Crohn's fistulas (pCF). Early explorative qualitative work 2 has demonstrated that pCF impact QoL far beyond restricting daily and sexual activities, and a patient-centred, patient derived tool is needed. We aimed to provide a patient reported outcomes measure (PROM) for this complicated disease phenotype; preliminary development of the PROM by a multidisciplinary clinical, research and patient study team is reported here. Methods: Following recognised PROM development procedures, 3 we (a) conducted unstructured qualitative interviews (n = 12; median duration 43 min, range: 18-145 min) to explore the experience of living with pCF; (b) completed a pragmatic thematic analysis of transcribed interviews to identify the 'long list' of issues of importance/concern to patients; (c) incorporated outcomes from a pre-existing multidisciplinary systematic review/consensus exercise assessing outcomes in patients undergoing interventions for pCF; (d) refined the number of items at a further team meeting by eliminating repetition and overlap. Results: From the original long list (45 items), 35 items were retained under three broad categories. (1) Fistula symptoms; (2) fistula treatment ; (3) impact of fistulae on quality of life. The list was reviewed by the study team and converted into questions (Category 1) and statements (Categories 2 and 3). The team also agreed to adopt scales measuring frequency (1-5) in the symptom category, and degree of agreement (1-5) in treatment/quality of life categories. Conclusions: The PROM to assess clinical outcome and QoL in patients with Crohn's anal fistula-the CAF-QoL-is ready for refinement and testing. Planned cognitive semi-structured interviews with patients will inform further item reduction, followed by validation (test-retest) of the questionnaire to confirm the final version of the Crohn's Anal Fistula Quality of Life (CAF-QoL) tool. References 1. Geese K, et al. A global consensus on the classification, diagnosis and multidisciplinary treatment of perianal fistulising Crohn's disease. Gut, 2014. 2. Yassin N, et al. Living with anal fistulae. Gut, 2015;(Suppl. 1). 3. Rothrock N, et al. Developing a valid patient-reported outcome measure.