Rookes, Tasmin;
Armstrong, Megan;
Walters, Kate;
Read, Joy;
Chesterman, Elizabeth;
Davies, Nathan;
Pigott, Jennifer;
... Schrag, Anette; + view all
(2025)
Feasibility and Acceptability of Intervention and Trial Procedures of the UCL Live Well With Parkinson's Self-Management Toolkit.
Parkinson's Disease
, Article 2804226. 10.1155/padi/2804226.
(In press).
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Abstract
Managing Parkinson’s disease (PD) symptoms can be challenging due to multiple factors, including complex symptoms, which are often reported late, and a lack of resources, resulting in worse outcomes. Self‐management of PD symptoms is a priority for patients, their carers, healthcare staff and systems. However, there is no effective comprehensive self‐management intervention for use in the United Kingdom to support people with PD to self‐manage problematic symptoms. We have developed a facilitated self‐management toolkit through literature reviews and co‐design workshops. We conducted a single‐group, pre–post feasibility study to evaluate the feasibility and acceptability of this toolkit, ahead of a randomised controlled trial (RCT). We assessed the feasibility of the study by measuring recruitment rate, retention rate, data completion, outcome measures and serious adverse events. In addition, we collected fidelity data to ensure the intervention was delivered as designed. For acceptability, we measured participants’ engagement through attendance at sessions, as well as through a feedback survey completed by participants at follow‐up. In a subgroup of participants, we conducted semistructured interviews to gain feedback on what participants thought was good and what could be improved with the intervention, as well as how acceptable the trial procedures were. All quantitative data were summarised descriptively, and qualitative data were analysed using codebook thematic analysis. We successfully recruited the target population within a predefined timeline, maintained intervention engagement and completed sufficient follow‐up, with limited missing data and no intervention‐related serious adverse events. The intervention was delivered with 93% fidelity, and 89% of participants were engaged. Participants found the supporter sessions most helpful, followed by information pages, and setting person‐centred goals. Having all their PD information in one place was seen as valuable, as well as talking through their challenges and problem‐solving how to overcome them. The toolkit is now being tested in a national RCT. / Trial Registration: ISRCTN registry: ISRCTN92831552
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