Priority setting exercise in faecal incontinence

Background

We have funded a project that invites consumers, health care professionals and healthcare policy makers to share ideas for future research topics in the area of faecal incontinence. The project collected information through surveys and then held an online workshop to refine a broad range of identified topics into a list of international importance. The results will guide decision making for Cochrane Incontinence over the next five years as we plan further systematic reviews. Gathering information in this way makes sure we are focusing on publishing Cochrane Reviews in meaningful and important areas to patients and their caregivers.

Aim

To identify a list of priority topics of interest to the main stakeholders within the faecal incontinence field and rank them according to their relevance. 

Organisations involved in delivering the project

Cochrane Incontinence funded and oversaw the project, which was delivered by the Evidence Synthesis Group based at Newcastle University and NIHR Innovation Observatory (NIHR-IO). A Steering Committee comprised of members from the Cochrane Incontinence editorial base and specialist academics provided governance to the project.

Steering Committee members

  • Donna Bliss (Professor and School of Nursing Foundation Professor of Nursing Research, University of Minnesota)
  • Lynne Corner (Professor of practice for engagement, Newcastle University)
  • Dawn Craig (Professor of Practice in Evidence Synthesis, Newcastle University)
  • Lindsey Elstub (Managing Editor, Cochrane Incontinence)
  • Eugenie Johnson (Assistant Managing Editor, Cochrane Incontinence)
  • Nicole O’Connor (Assistant Managing Editor, Cochrane Incontinence)
  • Fiona Pearson (Senior Research Associate, Newcastle University)
  • Katie Thomson (Research Associate, Newcastle University)
  • Luke Vale (Co-ordinating Editor, Cochrane Incontinence)
  • Sheila Wallace (Information Specialist, Cochrane Incontinence)

Priority-setting project stages

Survey

During the first stage, a short survey (now closed) was disseminated internationally through social media, patient advocacy groups and professional networks. The survey captured a broad range of perspectives and experiences so future research can improve the management and symptoms of faecal incontinence. The project team collated this information and identified common themes.  The themes were mapped against faecal incontinence topics identified by the 6th International Consultation on Incontinence alongside existing (and planned) research evidence.

The survey is now closed.

Evidence synthesis

After the survey, a variety of evidence-gathering approaches were undertaken to:

  • Understand which review articles relevant to faecal incontinence are the most viewed within the Cochrane Incontinence portfolio;
  • Identify existing systematic reviews to understand research gaps and unmet needs;
  • Apply horizon scanning techniques to identify up and coming clinical trials that could potentially address unmet needs.

Workshop

A total of 21 participants took part in an online workshop, guided by skilled facilitators, where they refined and ranked the priority areas.

Results

The final report and evidence map, which contains details of all the included systematic reviews, clinical trials and survey results, can be viewed by clicking on the link below.

Sixty-eight survey respondents suggested 268 priority topics, which were categorised into 21 topic domains ranging from bowel management to drug treatments. During the evidence synthesis phase, 114 systematic reviews and 136 clinical trials were identified. The results were included in the evidence map and mapped according to the 21 topic domains alongside the survey results.

Twenty-one people, purposefully selected to ensure maximum diversity, attended the one-day online workshop. The results from the evidence map were presented to the attendees and each area was discussed in more detail using online tools and breakout sessions to facilitate the refining and ranking process.

The top six priority areas derived from the project are:

  • Education
  • Impact and burden of living with FI
  • Psychological support
  • Healthcare service improvements and inconsistencies
  • Stigma
  • Treatments and management

Full report available here.

Evidence map available here.

Full protocol available here.

Copyright © National Institute for Health Research Innovation Observatory (NIHRIO), The University of Newcastle upon Tyne