UCL Queen Square Institute of Neurology


Understanding the Needs of People with Parkinson’s

Before developing the toolkit, systematic reviews of effectiveness and patient perspectives, qualitative research and a rigorous co-design process partnering with key stakeholders were conducted to understand the self-management needs of people with Parkinson's. The aims of this work were to:

  1. Systematically review the evidence for self-management in Parkinson’s and similar conditions and other management guidelines for Parkinson’s.

  2. Conduct a qualitative study exploring with people with Parkinson’s, carers, health and care professionals their experiences and goals for Parkinson’s care and self-care.

Below are the published papers following on from this work. Others are still being written, submitted and peer reviewed and will be uploaded here when published.

Self-Management Components as Experienced by People with Parkinson’s Disease and Their Carers: A Systematic Review and Synthesis of the Qualitative Literature (Tuijt et al., 2020)

This systematic review identified six studies focusing on interveiws with people with Parkinson's and their carers anf how they self-manage their health and well-being.  From these, seven main 'components' were described as useful and should be inculded in future self-management programmes for people with Parkinson's, targetting their specific needs. 

Link to full paper here

Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review (Nimmons et al., 2020)

This systematic review identified eight effective components to support advanced care planning in parkinsonian disorders. This work was presented at the Society for Academic Primary Care (SAPC) Madingley and internationally at the European Geriatric Medicine Society Congress.

Link to full paper here