PD-Pal
Research type
Research Study
Full title
Evaluating a combined person-centred intervention of Advance Care Planning (ACP) and care coordination for people with Parkinson’s disease and their family caregiver(s)
IRAS ID
271717
Contact name
Anette Schrag
Contact email
Sponsor organisation
Radboud University Medical Centre
Clinicaltrials.gov Identifier
Z6364106/2019/10/65, Data Protection Registration
Duration of Study in the UK
1 years, 8 months, 29 days
Research summary
Parkinson’s disease (PD) is an incurable neurodegenerative disease that affects 1%-2% of the population above 65 years of age. It is traditionally known as a movement disorder, but recent evidence has shown the negative impact of non-motor symptoms, increased caregiver distress, and difficulty in providing effective palliative care in the late stages of the disease progression. Disease management in the advanced stages of Parkinson’s is increasingly difficult, and people with Parkinson’s can experience discomfort at the end of life. There is limited access to and limited knowledge about palliative care services for this population. Advance Care Planning (ACP) is a process of communication between those with Parkinson’s, their caregivers, and family about care and treatment preferences. It enables patients to outline goals and preferences for future medical treatment and care, and has been shown as a potential strategy to improve communication between people with Parkinson’s and healthcare professionals. ACP could benefit people with Parkinson’s in relation to their advanced disease and involving palliative care at an earlier stage, but it has not been studied yet.
This study aims to examine the effectiveness of a community-based outpatient palliative care intervention for people with Parkinson’s and their family caregiver compared to care as usual . This is a non-pharmacological intervention which aims at demonstrating the effectiveness and feasibility of a novel care model to provide disease-specific community-based palliative care to people with Parkinson’s. This will be a multi-centre randomised controlled trial in six European sites (i.e. UK, Germany, Austria, Italy, Greece, Estonia) involving participants severely affected by Parkinson’s and their family caregivers. The community-based palliative care intervention will be offered to these participants and will last for 6 months from the allocation to treatment group.
REC name
London - Central Research Ethics Committee
REC reference
20/LO/0122
Date of REC Opinion
27 Mar 2020
REC opinion
Further Information Favourable Opinion