University of Stirling, Stirling, UK.
London North West Healthcare NHS Trust, London, UK.
Health Expect. 2017 Dec;20(6):1421-1427. doi: 10.1111/hex.12585. Epub 2017 Jul 4.
There is a recognized need to include patients in setting research priorities. Research priorities identified by people with a stoma are rarely elicited.
To improve the quality of life of people with a stoma through use of evidence-based practice based on research priorities set by patients.
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.
People 16 years of age and over who currently have or have had a stoma for treatment for any medical condition.
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.
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.
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.
人们已经认识到需要让患者参与制定研究重点。但是，很少有研究重点是由造口患者提出的。
通过基于患者确定的研究重点的循证实践，提高造口患者的生活质量。
2016 年通过英国造口慈善机构在线发布了试点调查。人们按照研究重点的顺序对 9 个与造口相关的生活质量主题进行了排名。
年龄在 16 岁及以上，目前有或曾因任何医疗条件而接受造口治疗的人。
对九个研究主题的每个主题的优先得分分布进行了检查。根据组的数量，使用曼-惠特尼 U 检验或克鲁斯卡尔-沃利斯检验来探索组间差异。
共有 225 人完成了调查。最重要的研究重点是袋漏问题和造口袋/器具问题，其次是疝风险。男性和女性、年龄、导致造口的基础疾病、造口类型以及带造口的时间长短在研究重点的排名上存在统计学差异。
有造口的人愿意参与并确定研究重点。研究结果应该有助于未来对造口相关问题的研究，这些问题会影响生活质量。
