Research priorities about stoma‐related quality of life from the perspective of people with a stoma: A pilot survey

BACKGROUND: There is a recognized need to include patients in setting research priorities. Research priorities identified by people with a stoma are rarely elicited. OBJECTIVES: To 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 METHODS: Online pilot survey publicized in 2016 via United Kingdom stoma charities. People ranked nine stoma‐related quality of life topics in order of research priority. PARTICIPANTS: People 16 years of age and over who currently have or have had a stoma for treatment for any medical condition. ANALYSIS: Distributions 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. RESULTS: In 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. CONCLUSION: People 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.