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

Abstract

Aim

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).

Methods

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.

Results

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.

Conclusion

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.