A new toolkit will coach people with Parkinson’s to manage their own symptoms at home, supported by specially trained healthcare professionals. Parkinson’s is a progressive neurological condition that causes both motor and non-motor symptoms, but many of these go unrecognised or untreated outside specialist clinics. This project addresses a gap: patients and non-specialist staff often lack practical guidance on managing the condition day-to-day. The researchers will co-design a “My PD-Care” self-management toolkit and a training package for health professionals, then test it in a randomised controlled trial with 338 people. If the intervention proves effective and cost-effective, it could reduce symptom burden, disability, and the need for hospital visits for thousands of people living with Parkinson’s in the UK. The approach shifts care from reactive specialist appointments toward proactive, patient-led management in primary care and community settings—potentially easing pressure on the NHS while improving quality of life for patients and their carers.
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Background and rationale: Parkinson s disease is a progressive neurological condition associated with multiple motor and non-motor symptoms, increasing disability and high resource use. Many symptoms can be effectively managed, but are often not recognised or treated outside specialist settings. Increasing patient participation in management and improving awareness of best practice guidelines in patients, carer and health and care professionals (HCP) in non-specialised settings has potential to reduce symptom burden, disability and health care utilisation. Aim: To develop, optimise and evaluate the clinical and cost-effectiveness of a facilitated self-management intervention for people with Parkinson s disease. Research plan Design: Evidence synthesis, co-design of intervention, feasibility study, randomised-controlled trial of effectiveness and cost-effectiveness, process evaluation. This programme of research is based on the MRC framework for complex interventions. Setting: Secondary care, primary care, community Target population: Community-dwelling people with Parkinson s disease. Exclusion criteria: atypical Parkinsonism, currently an inpatient or living in a care home, lack capacity to take part , life expectancy <6months Work packages WP1: Specifying the core components for PD-Care (Months 0-12) This WP aims to understand the problem and clarify mechanisms of action of the intervention. WP1_1: Systematic Literature Reviews: We will undertake formal systematic reviews summarising the existing evidence on: Evidence on self-management of PD Evidence on best practice management guidelines for PD We will conduct a meta-analysis where appropriate and thematic synthesis of qualitative data. WP1_2: Qualitative studies Two linked qualitative studies with a) semi-structured interviews with people with PD (PwP) and their carers (n=up to 40) and b) focus groups (n=4) and semi-structured interviews (n=up to 20) with HCPs. These will explore experiences and goals for self-management of PD, feasibility, barriers and facilitators for interventions to support this, and models of integration into routine care. Data will be analysed using thematic analysis. The findings from WP 1_1 and 1_2 will, combined with our proposed theoretical framework, inform the overall content and presentation of our intervention. WP2: Development of My PD-Care toolkit and supporting training for HCPs (Months 9-16) The intervention will be developed following the principles of co-design, with partnership with people with PD, carers and practitioners. With parallel iterative user-testing, this will provide a prototype then beta version for further testing. Proposed intervention content: 1) The self-management toolkit (My PD-Care) Information on PD, self-management and accessing support Patient-held adaptable care plan Active self-management of PD, pro-active strategies to prevent deterioration. Identification and management of complications algorithms 2) HCP training package in supporting self-management of PD 3) HCP facilitation of use PD-Care WP3: Feasibility and acceptability of PD-Care in practice (Months 16-23) Feasibility study with people with PD/carers (n=35) and optimisation of both components of the final intervention and study procedures. Data will be collected on uptake, attrition, outcome data collection, feasibility and acceptability. WP4: Randomised controlled trial (RCT) with internal pilot testing clinical and cost effectiveness of PD-Care (Months 17-56) Single-blind RCT of clinical effectiveness in reducing PD-related disability in people with PD/their carers. Participants (n=338) will be recruited from primary and secondary care and individually randomised to receive the intervention or treatment-as-usual (TAU), with follow-up for one-year. The first six months of recruitment (n=80) will form an internal pilot with stop/go criteria. Outcomes: Primary: Movement Disorders Society-Unified Parkinson s Disease Rat
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