Small, Nicola 
ORCID: 0000-0002-7879-7967, Planner, Claire ORCID: 0000-0003-0938-0444, Gillies, Katie ORCID: 0000-0001-7890-2854, Sanders, Caroline ORCID: 0000-0002-0539-928X, Turner, Katrina, Young, Bridget ORCID: 0000-0001-6041-9901, Donnelly, Ailsa, Brown, Lindsey, Holt, Anjie, Hogg, Judith et al (show 2 more authors)
(2024)
Developing a measure of participant experience of trials: qualitative study and cognitive testing
F1000Research, 13.
78-.
ISSN 2051-7599, 2046-1402
Abstract
<h4>Background: </h4> To encourage participation in trials, people need to have a positive experience. However, researchers do not routinely measure participant experience. Our aim is to facilitate routine measurement by developing a measure that captures the participant perspective, in a way that is meaningful, acceptable and useful to trial teams and participants. Methods We conducted a focus group and 25 interviews with trial professionals and trial participants to explore how participant experiences of trials should be measured, and to identify domains and items to include in the measure. Interviewees were also asked to comment on a list of candidate domains and items informed by a previous review of the literature on participant experience measures. Interviews were analysed thematically. Candidate domains and items were incorporated into a draft measure. Cognitive testing was undertaken in two rounds to ensure the items were comprehensible and grounded in participant experience. Results Interviewees and patient and public contributors reported that standardising the measurement of participant experience of trials had the potential to improve trial experience but described issues around the timing of measurement. Cognitive testing highlighted issues with comprehension, recall and response and numerous items were removed or refined. We developed a standard and a short version of the measure for feasibility testing. Conclusions We developed a measure covering important domains of participant experience of trials, which could assist trial teams and participants to improve trial design and enhance delivery of a meaningful participant experience.
| Item Type: | Article |
|---|---|
| Uncontrolled Keywords: | 4203 Health Services and Systems, 42 Health Sciences, Clinical Research, Behavioral and Social Science, Clinical Trials and Supportive Activities, 8.4 Research design and methodologies (health services), 3 Good Health and Well Being |
| Divisions: | Faculty of Health & Life Sciences Faculty of Health & Life Sciences > Inst. Population Health |
| Depositing User: | Symplectic Admin |
| Date Deposited: | 18 Mar 2024 09:45 |
| Last Modified: | 08 Oct 2026 18:54 |
| DOI: | 10.12688/f1000research.138829.1 |
| Open Access URL: | https://f1000research.com/articles/13-78 |
| Related Websites: | |
| URI: | https://livrepository.liverpool.ac.uk/id/eprint/3179628 |
| Disclaimer: | The University of Liverpool is not responsible for content contained on other websites from links within repository metadata. Please contact us if you notice anything that appears incorrect or inappropriate. |
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