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Lookup NU author(s): Nicole O'ConnorORCiD, Eugenie Johnson, Sheila WallaceORCiD, Dr Fiona Pearson, Professor Luke ValeORCiD
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Background: To develop a list of enuresis outcome measures that have been reported in randomised trials and systematic reviews and identified as important by people with lived experience of enuresis. Listing enuresis outcome measures is the first methodological step in developing a core outcome set to ensure relevance, quality, and comparability across trials. Aims: To generate a list of candidate outcome measures. Methods: Following recommended COMET methodology a convergent parallel mixed methods research design was undertaken. This comprised a scoping review and semi-structured interviews. The scoping review searched nine electronic databases for outcome measures that have been reported in randomised controlled trials and systematic reviews of effectiveness published from 2017-2022 (search date: 11 May 2022).Semi-structured interviews took place on-line (May – June 2022) with a convenience sample of six participants recruited by snowball technique utilising existing communication channels with patient organisations and professional bodies. Interviews were audio recorded, transcribed verbatim, and analysed using open abductive coding and the framework method. Findings were integrated into the five core areas of the COMET taxonomy along with the identified published outcome measures. Results: During the scoping review, 2,210 records were screened at title and abstract stage, 207 records at full text with 140 records included. Due to high volume of identified literature, a date restriction was placed, and of the included studies, 87 were labelled ‘awaiting classification’ 15 as ‘ongoing studies’ and 38 articles underwent data extraction and synthesis. Two hundred and sixty-two codes were generated from the interview transcripts, these were arranged into themes and integrated with the scoping review findings into four of five core areas of the COMET taxonomy. Conclusions: This study relied on single screening, data extraction, qualitative data coding and analysis, this increases chances of error during these processes comparative to their undertaking in duplicate. Frequency of wet nights is a priority outcome measure. However, emotional and social functioning are identified as being important to people with lived experience but are infrequently reported in randomised controlled trials and systematic reviews. Core outcome sets should consider their inclusion to increase their uptake in future clinical research ensuring its relevance to all stakeholders.
Author(s): O'Connor N, Johnson EE, Wallace SA, Pearson F, Vale L
Publication type: Conference Proceedings (inc. Abstract)
Publication status: Published
Conference Name: 7th UK Patient Reported Outcome Measures (PROMs) Research Conference: 'PROMs Across the Lifespan'
Year of Conference: 2023
Print publication date: 22/06/2023
Acceptance date: 22/05/2023
Publisher: PROMs
URL: https://www.sheffield.ac.uk/scharr/7th-uk-patient-reported-outcome-measures-proms-research-conference-proms-across-lifespan
