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