The PD Life Study
Research type
Research Study
Full title
Exploring the treatment burden and capacity of people with Parkinson's and their caregivers
IRAS ID
277464
Contact name
Helen Roberts
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
1 years, 5 months, 2 days
Research summary
Parkinson’s is a progressive neurological disorder affecting approximately 145,000 people in the United Kingdom. People with Parkinson’s (PwP) have many symptoms including tremor, stiffness, slow movements, constipation, urinary incontinence and mental health issues. They are often older and have other long-term health conditions.
PwP need to do many things to look after their health including manage multiple medications, attend healthcare appointments and lifestyle changes such as improving diet and exercise. The effort of looking after their health and its impact on them is termed ‘treatment burden’. Some PwP need help from their family or friends (caregiver) to complete these tasks. Caregivers may also experience treatment burden themselves when caring for someone with Parkinson’s. People’s ability to manage treatment burden is termed ‘capacity’ and is influenced by physical, mental, social and economic factors.
Treatment burden and capacity in PwP and their caregivers has not been researched. We hypothesise that they may experience high treatment burden with reduced capacity to manage their health. High treatment burden is associated with poor adherence to treatment regimens, poor health outcomes, worse quality of life and wasted healthcare resources.
We will interview PwP and caregivers in Hampshire and Dorset to understand their experiences and identify factors that influence treatment burden and capacity. These factors will be further explored in a national survey for PwP and caregivers, supported by Parkinson’s UK. Then, we will hold focus groups with PwP, caregivers, voluntary sector representatives, healthcare professionals, policy makers and managers to discuss and prioritise recommendations for change.
We will hold a dissemination event with key stakeholders to finalise the recommendations of ways to reduce the treatment burden or enhance capacity of PwP and their caregivers. This study may inform the development of new healthcare services and/or policies for PwP and their caregivers.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
21/WM/0058
Date of REC Opinion
29 Mar 2021
REC opinion
Further Information Favourable Opinion