Feasibility and Acceptability of Intervention and Trial Procedures of the UCL Live Well With Parkinson's Self‐Management Toolkit.
No Thumbnail Available
Authors
Rookes, Tasmin
Armstrong, Megan
Walters, Kate
Read, Joy
Chesterman, Elizabeth
Davies, Nathan
Pigott, Jennifer
Nimmons, Danielle
Ambler, Gareth
Adeleke, Mariam
Check for full-text access
Issue Date
21/08/2025
Type
Journal Article
Language
Keywords
Neurodegenerative Diseases
Alternative Title
Abstract
Managing Parkinson’s disease (PD) symptoms can be challenging due to multiple factors, including complex symptoms, whichare often reported late, and a lack of resources, resulting in worse outcomes. Self-management of PD symptoms is a priority forpatients, their carers, healthcare staf and systems. However, there is no efective comprehensive self-management intervention foruse in the United Kingdom to support people with PD to self-manage problematic symptoms. We have developed a facilitatedself-management toolkit through literature reviews and co-design workshops. We conducted a single-group, pre–post feasibilitystudy to evaluate the feasibility and acceptability of this toolkit, ahead of a randomised controlled trial (RCT). We assessed thefeasibility of the study by measuring recruitment rate, retention rate, data completion, outcome measures and serious adverseevents. In addition, we collected fdelity data to ensure the intervention was delivered as designed. For acceptability, we measuredparticipants’ engagement through attendance at sessions, as well as through a feedback survey completed by participants atfollow-up. In a subgroup of participants, we conducted semistructured interviews to gain feedback on what participants thoughtwas good and what could be improved with the intervention, as well as how acceptable the trial procedures were. All quantitativedata were summarised descriptively, and qualitative data were analysed using codebook thematic analysis. We successfullyrecruited the target population within a predefned timeline, maintained intervention engagement and completed sufcientfollow-up, with limited missing data and no intervention-related serious adverse events. Te intervention was delivered with 93%fdelity, and 89% of participants were engaged. Participants found the supporter sessions most helpful, followed by informationpages, and setting person-centred goals. Having all their PD information in one place was seen as valuable, as well as talkingthrough their challenges and problem-solving how to overcome them. Te toolkit is now being tested in a national RCT
Description
Citation
Parkinson's Disease. 2025; 2804226: 1-12
Publisher
License
Journal
Parkinson's Disease
Volume
Issue
2804226.0