Right at the end of January the HSP support group was invited to attend the Physical Activity in Rare Conditions Collaboration (PARCC) Meeting in Cardiff. I attended with Ian Bennett. The group organising the meeting are just starting a piece of research looking at how to promote/support physical activity in people with rare conditions.
The research is being run by a group of researchers with an interest in rehabilitation for people with rare neurological conditions from three universities in the UK - Dr. Gita Ramdharry from Kingston/St George’s University, Prof. Monica Busse from Cardiff University and Prof. Jon Marsden from Plymouth University.
HSP was one of five conditions invited to the meeting, along with Muscular Dystrophy (represented by Muscular Dystrophy UK), Ataxia (represented by Ataxia UK), Huntingtons Disease (represented by the Huntingtons Disease Association) and Progressive Supranuclear Palsy (represented by the Progressive Supranuclear Palsy Association).
They have conducted initial research with Huntingtons Disease which has shown the importance of structured support and information to allow people to find ways of keeping physically active that they enjoy and helps them to manage their condition. You can read about this here: https://www.neurology-central.com/2016/05/12/11072/, here: http://blogs.cardiff.ac.uk/active-huntingtons-disease/physical-activity-in-huntingtons-disease-ehdn2016/ and here: http://www.sciencedirect.com/science/article/pii/S1353802016302437. This research shows that "a short-term exercise intervention is safe, feasible, and leads to significant improvements in fitness and motor function in people with HD"
The group of researchers has experience working with neurological conditions, physiotherapy and exercise, and they are looking to expand this concept to cover more rare conditions so that there is a sufficiently large program of work to bring people together, to have more study power and to give stronger, more conclusive results.
The initial starting point of the discussion was on the challenges around using physical activity as a treatment. The first step is to define what is meant by "physical activity" - this means different things to different people, and whilst it might mean specific exercises/activities to some, it might be more like just getting out of the house more often to others.
There has been a history of poor advice given, people have differing physical challenges, there are varying issues with access to facilities and costs, the support from professionals and/or carers varies, along with issues on motivation, choice and the time taken. Essentially the group is trying to get a good handle on these issues to develop a solution/intervention to support people.
Trial design was mentioned briefly, including this article on how you can design randomised trials for smaller populations: https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0722-3/open-peer-review.
Part of the day was spent with each charity describing the main features of each of the conditions, and taken together there are many strong similarities - principally that they all have a long term gradual deterioration in mobility, there are often mood changes with the conditions and day-to-day variation can be bigger than the long term changes. There were also some subtle differences, for example those with PSP and HD often are better in the afternoon, whereas some with HSP are better in the morning.
An interesting aspect was talking about how to get physical activity into the daily routine. With some the benefit might greater getting the activity as a routine before it is needed, so that it can be practised before it becomes difficult. Activities will need to adapt to peoples changing conditions - for example activity for someone who can still walk may be different from someone who spends most of their time in a wheelchair. There are also a range of personal factors which need to be considered - some people are happy to go to the gym, whereas others are more self conscious and would dislike going. Some people prefer to undertake activity in a group, whereas others prefer to do it alone.
Another topic is how the activity would be measured. The group are keen that the activity can be measured easily, and this might be by indirect methods - how often people leave their home or how their quality of life changes rather than how the specific activity might be assessed in the clinic.
The group are keen to develop a tool that is individualised, accessible when needed, meaningful, and focuses on what is trying to be achieved rather than the specifics of what could be done. Overall, I thought it was a really useful day, and I'm looking forward to the next stage.
Things which came up, to look up another day include:
Life Space Diaries: eg http://journals.sagepub.com/doi/pdf/10.1177/073346489901800404
Health Unlocked Forum: https://healthunlocked.com/
Goal attainment scaling: https://en.wikipedia.org/wiki/Goal_Attainment_Scaling
COM-M models: http://www.behaviourchangewheel.com/about-wheel
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