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. 2017 Dec;20(6):1421-1427.
doi: 10.1111/hex.12585. Epub 2017 Jul 4.

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

Gill Hubbard  1 , Claire Taylor  2 , Becca Beeken  3 , Anna Campbell  4 , Jackie Gracey  5 , Chloe Grimmett  6 , Abi Fisher  3 , Gozde Ozakinci  7 , Sarah Slater  8 , Trish Gorely  1
Affiliations

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

Gill Hubbard et al. Health Expect. 2017 Dec.

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.

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