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

Citation

Hubbard G, Taylor C, Beeken B, Campbell A, Gracey J, Grimmett C, Fisher A, Ozakinci G, Slater S & Gorely T (2017) Research priorities about stoma-related quality of life from the perspective of people with a stoma: A pilot survey. Health Expectations, 20 (6), pp. 1421-1427. https://doi.org/10.1111/hex.12585

Abstract
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.

Keywords
colostomy; ostomy; public/patient involvement; research priorities; stoma; urostomy

Journal
Health Expectations: Volume 20, Issue 6