ENGAGE-HD
A study to assess whether physical activity could benefit patients with Huntington's Disease.
Background
Huntington's Disease (HD) is an inherited neurological disease, which over time results in progressive problems with movement, thinking and behaviour, and ultimately difficulties in undertaking usual activities of daily living. This was a randomised study where participants were randomly given one of two home-based programmes, which were specifically developed for people with HD. One was based on physical activity and the other on social activity. The study was commissioned because it is unknown if physical activity is beneficial to people with HD (or indeed any more beneficial than social interaction).
Assessing the benefits of physical activity
We know that keeping active (both physically and socially) is important for any person who has a chronic health condition. This can become very difficult for people with HD given the complex and varied problems that they are faced with on a daily basis. This study was specifically trying to address what impact, if any, a physical activity programme has for those with HD, and whether physical activity or the act of communicating with people, makes a difference.
Recruitment
We aimed to recruit 62 participants from eight centres across Great Britain. This was a big challenge given the relative rarity of the disease and also the complex nature of the symptoms. We managed to recruit 42 participants (approximately 40% of those who we approached). Some of those identified potentially eligible only wanted to take part in research involving drugs, and for others there were too many other complexities in their daily living to be able to consider taking part in research that required a certain commitment.
Study design
ENGAGE-HD Patient and Public Involvement Case Study
Full interview with Monica Busse and Astrid Burrell about the ENGAGE-HD study.
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The most unique aspect of this study was that HD participants received both programmes in their own home and that one of the programmes was based on social interaction alone and, over six sessions, participants were encouraged to talk about their interests with their coach.
Involving the public and patients
The public were involved right from the outset in the design and concept of the study. Our public representative advised on the study throughout and contributed to the dissemination day.
Learning from carers and the HD community
The public gave insight to specific problems that those with HD and their carers face on a daily basis. We invited participants, site staff and our steering group to join our management group at the end of the study to hear about the results and to share their experiences about being involved in the study.
Positive feedback
On the whole the feedback was very positive. Participants shared their thoughts in particular about the length and style of the assessments and also about the challenges in using exercise diaries. Moving forward as a study team, we will investigate the role of wearable technology to supplement our assessments.
Research impact
This was a feasibility study and was only designed to test if it was possible to run the two home-based programmes, if it was acceptable to participants, how well the assessments were received and how sensitive they were to measure any changes that took place. The results showed that both the home-based programmes were acceptable to participants. The assessments showed that the physical activity programme did have benefits for people with HD, although these results have to be taken with caution as this was a small study.
Potential wider study
Discussions are still ongoing as to how this study can be taken forward but it is clear that in order to properly measure how effective the exercise programme is, we would need to conduct a larger randomised trial.
Positive feedback from participants
The study participants from both groups reported that they enjoyed taking part. The social group valued the time to talk to the coach. If in a larger study the exercise programme was shown to be beneficial this would have huge impact on the lives of people and their families living with HD.
Funder: Health and Care Research Wales
Chief Investigator: Professor Monica Busse
