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Lookup NU author(s): Professor Camille CarrollORCiD
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).
© 2022 - The authors. Published by IOS Press. Background: Recruitment and retention of participants in clinical trials for Parkinson's disease (PD) is challenging. A qualitative study embedded in the PD STAT multi-centre randomised controlled trial of simvastatin for neuroprotection in PD explored the motivators, barriers and challenges of participants, care partners and research staff. Objective: To outline a set of considerations informing a patient-centred approach to trial recruitment, retention, and delivery. Method: We performed semi-structured interviews and focus groups with a subset of trial participants and their care partners. Quantitative and qualitative data were obtained through surveys circulated among the 235 participants across 23 UK sites at the beginning, middle and end of the 2-year trial. We also interviewed and surveyed research staff at trial closure. Results: Twenty-seven people with PD, 6 care partners and 9 researchers participated in interviews and focus groups. A total of 463 trial participant survey datasets were obtained across three timepoints, and 53 staff survey datasets at trial closure. Trial participants discussed the physical and psychological challenges they faced, especially in the context of OFF state assessments, relationships, and communication with research staff. Care partners shared their insights into OFF state challenges, and the value of being heard by research teams. Research staff echoed many concerns with suggestions on flexible, person-centred approaches to maximising convenience, comfort, and privacy. Conclusion: These considerations, in favour of person-centred research protocols informed by the variable needs of participants, care partners and staff, could be developed into a set of recommendations for future trials.
Author(s): Kehagia AA, North TK, Grose J, Jeffery AN, Cocking L, Chapman R, Carroll C
Publication type: Article
Publication status: Published
Journal: Journal of Parkinson's Disease
Year: 2022
Volume: 12
Issue: 5
Pages: 1591-1604
Print publication date: 08/07/2022
Online publication date: 16/04/2022
Acceptance date: 26/03/2022
Date deposited: 31/01/2024
ISSN (print): 1877-7171
ISSN (electronic): 1877-718X
Publisher: IOS Press BV
URL: https://doi.org/10.3233/JPD-212987
DOI: 10.3233/JPD-212987
PubMed id: 35466952
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