Abstract
BackgroundThere is a recognized need to include patients in setting research priorities. Research priorities identified by people with a stoma are rarely elicited.ObjectivesTo improve the quality of life of people with a stoma through use of evidence‐based practice based on research priorities set by patients.Design and MethodsOnline pilot survey publicized in 2016 via United Kingdom stoma charities. People ranked nine stoma‐related quality of life topics in order of research priority.ParticipantsPeople 16 years of age and over who currently have or have had a stoma for treatment for any medical condition.AnalysisDistributions of the priority scores for each of the nine research topics were examined. Group differences were explored using either the Mann–Whitney U‐test or the Kruskal–Wallis test depending on the number of groups.ResultsIn total, 225 people completed the survey. The most important research priority was pouch leak problems and stoma bag/appliance problems followed by hernia risk. There were statistically significant differences in ranking research priorities between males and females, age, underlying disease that led to a stoma, stoma type and length of time with a stoma.ConclusionPeople with a stoma are willing to engage in and set research priorities. The results should contribute towards future research about setting the research agenda for the study of stoma‐related concerns that impact quality of life.
Highlights
There are a number of conditions that as part of treatment may necessitate the formation of a stoma including colorectal cancer, diverticular disease, incontinence, ulcerative colitis and Crohn’s disease
The purpose is to improve the quality of life of people with a stoma through use of evidence-based practice based on research priorities set by patients
It is anticipated that these results will contribute towards further research about setting the research agenda for the study of stoma-related concerns that impact quality of life
Summary
There are a number of conditions that as part of treatment may necessitate the formation of a stoma including colorectal cancer, diverticular disease, incontinence, ulcerative colitis and Crohn’s disease. The ACPGBI acknowledge that there is a need to involve patient support groups in developing these research questions and establishing whether the questions resonate with patients as well as clinicians.[7] To address this, we conducted a pilot survey of people with experience of having a stoma to identify research priorities about stoma-related quality of life. The findings of this pilot survey could be used to inform the conduct of large-scale studies about research priorities for people with a stoma. The purpose is to improve the quality of life of people with a stoma through use of evidence-based practice based on research priorities set by patients
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