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The PD Life Study - Winter update 2021

Study progress update: Winter 2021

A systematic review of qualitative papers exploring the experiences of treatment burden in people with Parkinson’s (PwP) and their caregivers was completed by the research team in September 2020. Findings from the systematic review informed the second and third phases of The PD Life Study and have been published in the Journal of Parkinson’s Disease in July 2021 and presented at the national British Geriatrics Society Conference and international Movement Disorder Society Congress.

Participant recruitment for the second phase of the study commenced in June 2021. This phase involved interviews with PwP and their caregivers to explore their experiences and identify the factors that influence treatment burden and capacity. A purposive sample of PwP and caregivers recruited from Southern Health NHS Foundation Trust and University Hospitals Dorset NHS Foundation Trust was conducted, and a total of 17 participants recruited for the interviews. Data analysis of the interviews is almost complete.

Findings from the interviews have also informed the development of the third phase of the study, a national survey for PwP and caregivers. The national surveys were finalised and launched with support from Parkinson’s UK in September 2021. Participant recruitment to the surveys is planned up to the 31st of December 2021.

The findings from the interviews and national surveys will identify the factors that influence the treatment burden and capacity of PwP and caregivers. This will inform the final phase of the study. Focus groups with key stakeholders including PwP, caregivers, healthcare professionals, policymakers, and managers will be conducted in Spring 2022 to discuss the findings and develop recommendations of ways to reduce the treatment burden and improve the future experiences of PwP and their caregivers.

Research Outputs to date:

  1. The Experiences of Treatment Burden in People with Parkinson’s Disease and Their Caregivers: A Systematic Review of Qualitative Studies published in the Journal of Parkinson’s Disease (July 2021):
  2. Poster presentation of systematic review at international Movement Disorder Society Congress September 2021: (link to poster pdf)
  3. Presentation of systematic review at national British Geriatrics Society Conference President’s Round in November 2020