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

Hubbard, Gill; Taylor, Claire; Beeken, Becca; Campbell, Anna; Gracey, Jackie; Grimmett, Chloe; Fisher, Abi; Ozakinci, Gozde; Slater, Sarah; Gorely, Trish

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.

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), 1421-1427. https://doi.org/10.1111/hex.12585

• Journal Article Type: Article
• Acceptance Date: May 16, 2017
• Online Publication Date: Jul 4, 2017
• Publication Date: 2017-12
• Deposit Date: Jul 4, 2017
• Publicly Available Date: Jul 5, 2018
• Journal: Health Expectations
• Print ISSN: 1369-6513
• Electronic ISSN: 1369-7625
• Publisher: Wiley
• Peer Reviewed: Peer Reviewed
• Volume: 20
• Issue: 6
• Pages: 1421-1427
• DOI: https://doi.org/10.1111/hex.12585
• Keywords: Colostomy, ostomy, public/patient involvement, research priorities, stoma, urostomy
• Public URL: http://researchrepository.napier.ac.uk/Output/957698
• Contract Date: Jul 4, 2017