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

Abstract

BackgroundThere is a recognized need to include patients in setting research priorities. Research priorities identified by people with a stoma are rarely elicited.ObjectivesTo 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 MethodsOnline pilot survey publicized in 2016 via United Kingdom stoma charities. People ranked nine stoma‐related quality of life topics in order of research priority.ParticipantsPeople 16 years of age and over who currently have or have had a stoma for treatment for any medical condition.AnalysisDistributions 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.ResultsIn 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.ConclusionPeople 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.

An evaluation of the quality and content of web‐based stoma information

“…These included the Ostomy Life Study reported by Claessens et al . which comprised over 4000 patients with stomas from 11 countries and a UK‐based survey of research topics of importance to 225 stoma patients . Although these studies were taken into account during the design of the stoma‐specific score, the majority reflect only quality of life.…”

“…Other sources used included literature and systematic reviews of stomas and complications [17,18], current Google trends analyses of the recorded searches on the topics related to stoma care and large patient surveybased studies. These included the Ostomy Life Study reported by Claessens et al which comprised over 4000 patients with stomas from 11 countries and a UK-based survey of research topics of importance to 225 stoma patients [19,20]. Although these studies were taken into account during the design of the stoma-specific score, the majority reflect only quality of life.…”

Nursing research priorities based on CINAHL database: A scoping review

“…The third domain encompasses diseases where nursing research is scarce, and as a result, more research is urgently called for. Stroke (Lightbody, 2017;Rowat et al, 2016), heart failure (Stamp et al, 2018), Parkinson's disease (Shin & Habermann, 2016), osteoarthritis (Robbins & Kulesa, 2012), diabetes (Graue et al, 2013;Iversen et al, 2016) and stoma (Hubbard et al, 2017) are considered to be the above-mentioned areas of diseases. With respect to nursing research on diabetes, Iversen et al (2016) believe that future research may benefit from larger nurse-led research programmes organized into networks to share knowledge and expertise across national groups.…”

A physical activity intervention to improve the quality of life of patients with a stoma: a feasibility study

“…Interventions are needed that have the potential to improve the QoL for this group of patients. Physical activity (PA) has been identified by patients with a stoma as a research priority in relation to their QoL [20]. No studies have been conducted about associations between PA and patient-reported outcomes in people with a stoma.…”