Provision of physical activity for people with Huntington’s disease: inclusivity, diversity and fairness for all.
In the first post for this blog by ‘Active HD’ we highlight the need for better physical activity provision in Huntington’s disease (HD) and why. First, a two minute guide to HD…
The devastating impact of Huntington’s disease (HD) has been referred to as a “spectre” hanging over families living in its shadow1. The stigma associated with such a genetic disease causes isolation from society in general and within families, compromising quality of life and wellbeing for people with HD2. Ongoing health and social care is required to support the challenging and changing needs of those with HD. It is vital that every opportunity is available equally for people with HD to maintain quality of life for as long as possible.
One way of achieving this is through participation in physical activity. Maintaining fitness and physical function from early on in the disease process is vital to maintain quality of life in HD and is especially important given the duration of the disease and known burden on healthcare services. Ongoing efforts to define physiotherapy interventions3, validate outcome measures 4 and conduct robust evaluations of targeted physiotherapy led and community based exercise interventions 5-11 have shown that people with HD can achieve fitness and measurable functional benefit from specific exercise training. Indeed community and home based exercise interventions have been shown to be enjoyable and acceptable for people with HD.
Sustained engagement in meaningful activities is vital in HD where quality of life both in terms of physical and psychosocial well-being, are severely affected. To sustain an active lifestyle, support and adaptation are important, so that when changes occur, people are equipped with strategies and have appropriate support to deal positively with their changing abilities in a way that enables them to continue to be active for as long as possible.
Unfortunately experiences of people with HD across the UK in trying to access support and information to be more active suggests that there is there is inconsistency of provision for physical activity within the healthcare system and local council leisure services8. The specific needs of people with HD across the different stages means that the nature of required support differs as found in the research conducted over the last 6 years by the Cardiff HD Physiotherapy Group.
At grass roots level, there is much work happening in developing supportive resources for people to access online as well as engaging people in the emerging research related to physical activity in HD. However, if the policies and infrastructure are not in place to support people to be active, then participation for people with HD is always going to be challenging. In addition to the already complex issues people with HD face, such an environment is not conducive to sustained, regular physical activity. Consequences of physical inactivity in terms of cost in HD have not been explored. However mean annual costs per person in the early stage of disease were £2,250, rising to £89,760 in the later stages of the disease. The average cost across all stages was £21,605 per year. This equates to £195 million per year in the UK12. As would be expected with a degenerative condition, quality of life declines and mean costs increase with disease severity. The increase in costs for patients in the later stages of the disease is significant, presenting the case for investing. Investment in care and support, including physiotherapy and physical activity for people in the earlier stages of HD to keeps them functioning as well as possible for as long as possible.
Although it may be more challenging and resource intensive to support people with HD to be active this does not mean that they have less equal rights to such support than other populations. In fact, by prolonging function for longer, savings could be made through less access of healthcare services over the lifespan of the disease. Many current supportive (online) resources for physical activity and exercise referral schemes in long term and chronic conditions are not inclusive of HD. This serves to highlight the inequality in provision of physical activity for people with HD.
In order to achieve inclusivity of people with rarer conditions such as HD there needs to be a shift in the approach to provision of physical activity where diversity of relevant services within, and linked to the healthcare system is strived for.
- Maxted C, Simpson J, Weatherhead S. An Exploration of the Experience of Huntington’s Disease in Family Dyads: An Interpretative Phenomenological Analysis. J Genet Couns. 2014; 23(3):339-49.
- Wexler A. Stigma, history, and Huntington’s disease. Lancet. 2010; 376(9734), pp.18–9.
- Busse-Morris M, Khalil H, Quinn L, Brooks SP, Rosser AE. Practice, progress and future directions for physical therapies in Huntington’s disease. J Huntingtons Dis. 2012; 1(2):175-851.
- Quinn L, Khalil H, Dawes H, Fritz NE, Kegelmeyer D, Kloos AD, et al. Reliability and minimal detectable change of physical performance measures in individuals with pre-manifest and manifest Huntington disease. Phys Ther. 2013; 93, 942–956.
- Khalil H, Quinn L, van Deursen R, Dawes H, Playle R, Rosser A, Busse M. What effect does a structured home-based exercise programme have on people with Huntington’s disease? A randomized, controlled pilot study. Clin. Rehabil. 2013; 27, 646–58.
- Khalil H, Quinn L, van Deursen R, Martin R, Rosser A, Busse M. Adherence to use of a home-based exercise DVD in people with Huntington disease: participants’ perspectives. Phys. Ther. 2012; 92, 69–82.
- Busse M, Quinn L, Debono K, Jones K, Collett J, Playle R et al. A randomized feasibility study of a 12-week community-based exercise program for people with Huntington’s disease. J. Neurol. Phys. Ther. 2013; 37, 149–58.
- Quinn L, Trubey R, Gobat N, Dawes H, Edwards RT, Jones C et al. Development and Delivery of a Physical Activity Intervention for People With Huntington Disease: Facilitating Translation to Clinical Practice. J. Neurol. Phys. Ther. 2016; 40, 1–10.
- Quinn L, Hamana K, Kelson M, Dawes H, Collett J, Townson J et al. A randomized, controlled trial of a multi-modal exercise intervention in Huntington’s disease. Submitted Parkinsonism and Parkinsonism and Related Disorders.
- Cruickshank TM, Thompson JA, Domínguez DJF, Reyes AP, Bynevelt M et al. The effect of multidisciplinary rehabilitation on brain structure and cognition in Huntington's disease: an exploratory study. Brain and behaviour. 2015; 5(2)p.e00312
- Clark D, Danzl MM & Ulanowski E. Development of a community-based exercise program for people diagnosed and at-risk for Huntington’s disease: A clinical report. Physiotherapy Theory & Practice. 2016; 32(3) 232-9
- Jones C, Busse M, Quinn L et al. The societal cost of Huntington’s disease: are we underestimating the burden? Submitted, European Journal of Neurology.
Blog moderated by Ann Gates, CEO Exercise Works!