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Feasibility and Acceptability of Intervention and Trial Procedures of the UCL Live Well With Parkinson's Self-Management Toolkit.

作者信息

Rookes Tasmin, Armstrong Megan, Walters Kate, Read Joy, Chesterman Elizabeth, Davies Nathan, Pigott Jennifer, Nimmons Danielle, Ambler Gareth, Adeleke Mariam, Hunter Rachael, Gardner Benjamin, Atkinson Catherine, Schrag Anette

机构信息

Research Department of Primary Care and Population Health, University College London, London, UK.

Department of Clinical and Movement Neurosciences, University College London, London, UK.

出版信息

Parkinsons Dis. 2025 Aug 21;2025:2804226. doi: 10.1155/padi/2804226. eCollection 2025.


DOI:10.1155/padi/2804226
PMID:40895177
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12393956/
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. ISRCTN registry: ISRCTN92831552.

摘要
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7ae6/12393956/6d27a11065b5/PD2025-2804226.001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7ae6/12393956/6d27a11065b5/PD2025-2804226.001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7ae6/12393956/6d27a11065b5/PD2025-2804226.001.jpg

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本文引用的文献

[1]
Patient Acceptability and Technical Reliability of Wearable Devices Used for Monitoring People With Parkinson Disease: Survey Study.

JMIR Form Res. 2025-3-25

[2]
Co-Design of a Facilitated Self-Management Toolkit for People With Parkinson's Disease.

Health Expect. 2024-12

[3]
A physiotherapy group exercise and self-management approach to improve physical activity in people with mild-moderate Parkinson's disease: a randomized controlled trial.

Trials. 2024-1-22

[4]
Clinical and cost-effectiveness of 'Live Well with Parkinson's' self-management intervention versus treatment as usual for improving quality of life for people with Parkinson's: study protocol for a randomised controlled trial.

Trials. 2023-12-5

[5]
People with Parkinson's perspectives and experiences of self-management: Qualitative findings from a UK study.

PLoS One. 2022

[6]
Self-management Interventions for People With Parkinson Disease: Scoping Review.

J Med Internet Res. 2022-8-5

[7]
Digital Facilitation to Support Patient Access to Web-Based Primary Care Services: Scoping Literature Review.

J Med Internet Res. 2022-7-14

[8]
Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson's disease and their use of digital health to do this.

Digit Health. 2022-5-26

[9]
Use of Mobile Apps for Self-care in People With Parkinson Disease: Systematic Review.

JMIR Mhealth Uhealth. 2022-1-21

[10]
Systematic review and meta-analysis of clinical effectiveness of self-management interventions in Parkinson's disease.

BMC Geriatr. 2022-1-11

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