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The PD Life Study: Exploring the treatment burden and capacity of people with Parkinson’s and their caregivers

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The PD Life Study: Exploring the treatment burden and capacity of people with Parkinson’s and their caregivers

Principal Investigator: Professor Helen Roberts

Research team: Dr Qian Yue Tan (Research Fellow, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Professor Helen Roberts (Professor of Medicine for Older People, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Dr Kinda Ibrahim (Senior Research Fellow, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Dr Simon Fraser (Associate Professor of Public Health. School of Primary Care and Population Sciences, Faculty of Medicine, Southampton General Hospital), Dr Khaled Amar (Consultant Geriatrician and Honorary Senior Lecturer at Bournemouth University, Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust)

Start: October 2020  Ends: October 2022

Project Partners: University of Southampton, Bournemouth University, University Hospital Southampton NHS Foundation Trust, Royal Bournemouth and Christchurch Hospitals NHS Foundation.

Lay Summary
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. People are overburdened when the workload of looking after their health exceeds their capacity. This can lead to poor adherence with treatment, poor quality of life and worse health outcomes.

Aim
We aim to understand the factors that influence treatment burden and capacity in PwP and their caregivers.

Methods
Interviews with 15 PwP and 15 caregivers will identify factors that influence treatment burden and capacity. These factors will be explored further in a national survey for PwP and caregivers with support from Parkinson’s UK. We will then form focus groups with PwP, caregivers, voluntary sector representatives, healthcare professionals, policymakers and managers through Parkinson’s Excellence Networks to discuss the findings and prioritise recommendations for change.

This study will enable to us develop recommendations of ways to reduce treatment burden and improve future experiences of PwP and their caregivers.

This research is also supported by a legacy in memory of Carolyn and Tore-Jan Myhre