Objective: To assess the feasibility and acceptability of a theory and evidence-based digital facilitated self-management toolkit for people with Parkinson’s: ‘Live Well with Parkinson’s’.

Background: Self-management of long-term conditions involves medical management, emotional management, and changing unhealthy or maintaining healthy behaviours. We developed a digital self-management toolkit for people with Parkinson’s following systematic reviews, interviews, and co-design workshops.

Method: A pre-post feasibility study was conducted with a mixed methods process evaluation. 35 people with Parkinson’s and 17 carers, recruited through primary and secondary care, received the toolkit facilitated by four supporter sessions over three months. The supporter helped participants utilise the toolkit and manage problematic symptoms through problem solving, goal-setting and reviewing goals. Outcome assessments were completed at baseline and 3-month follow-up, including physical assessments, quality of life, recruitment rate, retention, quantitative process evaluation questionnaire and qualitative interviews. Interviews were audio-recorded and analysed using thematic analysis. All assessments and sessions were delivered remotely, via Zoom/telephone.

Results: Recruitment rate was on target and follow-up data was available for 32/35 (91%) participants. Questionnaire data revealed 86% were likely to continue using/would recommend the toolkit, and 63% set a goal that was helpful. Of those who set a goal, 63% felt they made progress with it. 14 completed interviews, alongside 6 carers and revealed most participants and carers reported receiving a digital intervention remotely was acceptable and no quality had been lost. Participants reported improvements following the intervention, including increased exercise, consistent medication taking and improved memory. Participants felt educated and empowered by the toolkit to take more control of their condition, often recording symptoms to use as prompts when meeting with healthcare professionals.

Conclusion: Recruitment and retention to the Live Well with Parkinson’s intervention was feasible, and the toolkit was acceptable and appeared beneficial to people with Parkinson’s/their carers. The toolkit is now being tested in a Randomised Control Trial.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/a-facilitated-self-management-toolkit-for-people-with-parkinsons-disease-a-feasibility-study-of-live-well-with-parkinsons/