ENGAGE-PD

Implementing the ENGAGE-PD physical activity coaching intervention for individuals newly diagnosed with Parkinson's
Elderly friends talking and stretching in a park

ENGAGE-PD

Implementing the ENGAGE-PD physical activity coaching intervention for individuals newly diagnosed with Parkinson's
 

Updates:

  • The fellowship runs from April 2025 to July 2028

Background

Physical activity is movement where people use more energy than at rest. It can include active hobbies as well as more structured exercise. Coaching is a guided process supporting the creation and achievement of personal goals.
There is a lot of research that suggests physical activity may help to slow down Parkinson's progression, but that people with Parkinson's are less active than people the same age. Investigating therapy support to promote physical activity for people in the early stages of Parkinson's is a research priority.
Parkinson's is the fastest-growing neurological condition in the world. It is predicted that one in 37 people alive today will be diagnosed with Parkinson's. It can affect mobility and independence. As people with Parkinson's have such different symptoms and experiences, it is recommended that they have an individualised, tailored approach to encourage physical activity.

Aims

Find out whether a coaching approach, called ENGAGE-PD, which provides 14 weeks of physiotherapist input with individualised, structured support to optimise physical activity, helps people recently diagnosed with Parkinson's to: 
  • Increase and maintain physical activity levels
  • Feel more confident about doing physical activity.
We will also explore whether: 
  • People with Parkinson's find ENGAGE-PD useful 
  • Physiotherapists feel it is realistic and feasible to deliver ENGAGE-PD long-term as part of their NHS support
  • ENGAGE-PD helps more than if people with Parkinson's just had usual NHS care.
If ENGAGE-PD is helpful to people recently diagnosed with Parkinson's and NHS services that support them, this could help service users to maintain activity levels, independence and self-management of their condition.

Design and methods

We will take the ENGAGE-PD approach, developed in the USA, and assess how feasible it is to adapt and deliver it by physiotherapists in NHS services for people within five years of a Parkinson's diagnosis. The study aims to determine whether it would be possible to conduct a larger future trial. 
To do this, we will ask around 40 people with Parkinson's and/or their care partners to help with the co-design of the UK version of ENGAGE-PD, asking what they believe the most important things to try in the UK are. We will also ask around 40 healthcare professionals who provide Parkinson's rehabilitation services how easy the approach would be to use in their services. 
Based on feedback, we will produce a version of ENGAGE-PD to test in a trial involving around 50 people recently diagnosed with Parkinson's. We will see whether it is possible to recruit, engage, and collect data from people for up to six months after they start the trial, so we know if doing a bigger trial will be possible and needed. Results will be analysed at 15 weeks and six months after the trial starts. 
We will measure how many people were recruited and how many dropped out. We will gather information on how much physical activity people with Parkinson's do, and how confident they are about taking part in physical activity, before and after the trial, as well as how many of the planned outcome measures were completed. We will ask physiotherapists involved in delivering ENGAGE-PD how easy it was to deliver and how/whether it could fit in with their current service delivery.

Patient and public involvement

Initial discussions and feedback from a Parkinson's Support Group in the South West of England influenced this project plan. We will work with a project advisory group of people with Parkinson's and/or their care partners who will advise on study information.

Dissemination

Findings will be presented to: 
  • Participants and contributors to the project design 
  • Local, regional and national Parkinson's UK groups and research networks (including people with Parkinson's, Parkinson's care partners, and healthcare and exercise professionals) 
  • Relevant scientific journals and newsletters.
 
ENGAGE-PD Project One.
 
Plain Language Summary for participants
Exploring the potential for ENGAGE-PD physical activity coaching in the UK National Health System for people newly diagnosed with Parkinson’s: perspectives of people with lived experience of Parkinson’s.

Background of the research:
Physical activity is movement where people use more energy than at rest. Examples include active hobbies or structured exercise. Coaching is a guided process supporting the creation and achievement of personal goals. 
Worldwide research suggests that physical activity may help to slow down Parkinson’s progression, but that people with Parkinson’s tend to be less active. It is a research priority to investigate therapy support to promote physical activity for people in the early stages of Parkinson’s.  
Aims and purpose of the research:
A physical activity coaching programme called ENGAGE-PD was originally developed in the USA. It was designed to encourage people with Parkinson’s to get active. This research aimed to gain the opinions of people with experience of Parkinson’s in the National Health Service to shape how ENGAGE-PD could be adapted in the UK.
Methods and research design:
We consulted with people with lived experience of Parkinson’s using ‘Group Concept Mapping’ (GCM). This involves participants in a structured process to organise the ideas of the group and reach an agreement. Ideas are presented in ‘concept maps.’
Parkinson’s UK supported recruitment of people with lived experience of Parkinson’s through their ‘Take Part Hub’. 
Using a secure website, participants were asked to provide ideas to complete the statement: ‘Specific things to engage people newly diagnosed with Parkinson’s in physical activity are…’ The answers formed the basis of the ‘Brainstorming’ stage. The next stage involved ‘Sorting’ the ideas into groups that make sense to the participants. The final stage involved ‘Rating’ ideas for relative importance and how realistic they could be used in the National Health Service. 
Results and importance:
Sixty-three participants (33 male and 30 female) contributed information. Fifty-nine were people with Parkinson’s. Thirty-six people had been diagnosed with Parkinson’s for less than three years. Four participants were care partners. Participants were mainly White British (59 people), well-educated, and came from every region of the UK. Participants contributed 118 ideas.
Five groups of ideas were identified relating to themes of: 
  • ‘Physical activity and wellbeing options’, 
  • ‘Motivational toolkit’, 
  • 'Parkinson’s specific activity’, 
  • ‘Active lifestyle support’, 
  • ‘Education and advice.’ 
The ideas with the highest scores for being important and realistic were in the groups of ‘active lifestyle support’ and ‘education and advice.’
The study reassured us that the main themes of ENGAGE-PD physical activity coaching are considered important and relevant to UK participants. It also provided several new ideas to use in a UK version of ENGAGE-PD to be tested in a future trial.