Research priorities for faecal incontinence in adults: A James Lind Alliance priority setting partnership.

Abstract

Faecal incontinence (FI) is common, yet clinical guidelines rely on low-quality evidence or expert opinion. A high proportion of research is focused on areas that may not be considered a priority by patients or clinicians. This project aimed to identify the top 10 research priorities for FI in adults in equal collaboration with patients, carers and healthcare professionals in a James Lind Alliance priority setting partnership (PSP). This PSP followed established methodology supported by a multidisciplinary steering group including those with lived experience of FI. Evidence uncertainties were gathered through a survey with free-text responses, summarised in indicative summary questions and prioritised in a second survey. An independently facilitated priority setting workshop used a nominal group technique to reach consensus on the order of research priorities, with a focus on the top 10. At all stages the views of healthcare professionals and individuals with a lived experience of FI were considered equally. After the initial survey, 512 respondents submitted 991 evidence uncertainties. These produced 54 indicative summary questions. In the second survey, 373 respondents generated a shortlist of 26 questions. Finally, the top 10 research priorities were determined by consensus at a face-to-face workshop and include unanswered questions concerning prevention, investigation, education, self-management and treatment of FI. This PSP has identified a comprehensive list of top research priorities, including items of importance to both healthcare professionals and individuals with a lived experience of FI. Researchers and funders should use these priorities to inform future work.