Our mission is achieved via two threads:
- By influencing Physiotherapy clinical practice through research and development of clinical guidelines. This strategy facilitates an internationally cohesive and standardised approach to management of people with HD.
- Direct engagement, communication and collaboration with the HD community and other associates. This thread is primarily related to education and advice.
Our present goals include:
- To support and enable the use of best evidence in physiotherapy for the Huntington’s disease community.
- To disseminate and support implementation of physiotherapy clinical practice guidelines across the HD community.
The EHDN has supported the development of physiotherapy guidelines from 2009 and the latest physiotherapy practice guidelines were published in January 2020. The three key documents related to physiotherapy practice are the 2013 Physiotherapy Clinical Guidelines, a systematic review on physical therapy and exercise interventions published in 2017 and the clinical recommendations to guide physical therapy practice published in 2020.
The 2013 guidelines provide guidance on the management of seven treatment classification e.g. exercise capacity, mobility balance and falls and end stage care. This document includes some detail on suitable outcome measures and management plans.
The systematic review published in 2017 summarises the research evidence available in the seven treatment classifications.
The 2020 clinical practice guideline used information from the systematic review and expert opinion to grade evidence for physiotherapy interventions in order to make recommendations.
These three documents complement each other with more current documents building on previous documents. There is no contradictory information across the documents.
- 2020 Clinical Practice Guideline: Quinn et al 2020 Clinical recommendations to guide physical therapy practice
- Systematic review: Fritz et al 2017 Physical Therapy and Exercise Interventions in Huntington’s Disease: A Mixed Methods Systematic Review
- 2013 guidelines: EHDN Physiotherapy clinical guidelines 2013
Summaries of the guidelines have been produced for physiotherapists and for the public.
Promoting active lifestyles in Huntington’s Disease
Keeping active during COVID-19
This webinar was produced by the Huntington’s Disease Association of England and Wales to support people in remaining active during the COVID-19 pandemic. The link also includes information on resources to keeping active at home.
HD on the move
This is a freely accessible online resource to support more active lifestyles in HD that was developed by Physiotherapy Working Group members. This resource provides information, signposting to other helpful resources, videos, fact sheets and more, all with a focus on physical activity in HD. An innovative, exciting collaboration with the European Huntington’s Association on this project means that the resource is hosted on their website as an important part of the ‘HD on the Move’ project.
Move to Exercise videos and booklets
This exercise programme has been developed by physiotherapists specifically for people with movement disorders. Exercise is not without its risks and this or any other exercise programme has potential to cause injury. To reduce the risk of injury, consult your doctor or physiotherapist before beginning this exercise programme. Your physiotherapist should be able to help you identify which exercises will be most beneficial for you or if you should modify or omit any of the exercises in the DVD. The exercises presented here are in no way intended as a substitute for medical consultation; the authors and producers disclaim any liability from and in connection with this program. As with any exercise programme, if at any point during your work out you begin to feel faint, dizzy or have physical discomfort, you should stop immediately and seek medical advice.
ENGAGE-HD physical activity workbook version 2
This workbook is intended to be used to support people with Huntington’s disease to plan regular physical activity with support from a physiotherapist. It includes information on goal setting and resources to help people with Huntington’s disease stay active, and it is suitable to be used alongside the Move to Exercise DVD programme. We advise that you ask your physiotherapist for guidance about use of this workbook, and in developing and progressing your own physical activity goals and plans.
Physical activity tool for people with Huntington’s disease PAT-HD
This tool is to help people with Huntington’s to think about what physical activity they could do and then make a plan to increase or maintain their physical activity over time. It was designed with people with Huntington’s disease, their families, specialist HDA advisors and healthcare professionals with funding from the HDA. You can use this tool by yourself to make your plan. You can also use it to have a talk about your activity plans with your specialist HD advisor, physiotherapist or other healthcare professional and then make your plan.
Clinical tips for physiotherapists
The physiotherapy working group of the European Huntington’s Disease Network developed four handouts to assist physiotherapists in providing care based on the unique needs of clients with Huntington’s disease.
The following are publications supported by the EHDN and carried out by members of the physiotherapy working group.
- Clinical recommendations to guide physical therapy practice for Huntington disease.
Quinn L, Kegelmeyer D, Kloos A, Rao AK, Busse M, Fritz NE.
Neurology. 2020 Feb 4;94(5):217-228. doi: 10.1212/WNL.0000000000008887. Epub 2020 Jan 6.
PMID: 31907286 Free PMC article.
- Physical Activity and Exercise Outcomes in Huntington Disease (PACE-HD): Protocol for a 12-Month Trial Within Cohort Evaluation of a Physical Activity Intervention in People With Huntington Disease.
Drew CJG, Quinn L, Hamana K, Williams-Thomas R, Marsh L, Dimitropoulou P, Playle R, Griffin BA, Kelson M, Schubert R, Muratori L, Reilmann R, Rosser A, Busse M.
Phys Ther. 2019 Sep 1;99(9):1201-1210. doi: 10.1093/ptj/pzz075.
PMID: 31101920 Clinical Trial.
- Physical therapy and exercise interventions in Huntington’s disease: a mixed methods systematic review protocol.
Quinn L, Busse M, Carrier J, Fritz N, Harden J, Hartel L, Kegelmeyer D, Kloos A, Rao A.
JBI Database System Rev Implement Rep. 2017 Jul;15(7):1783-1799. doi: 10.11124/JBISRIR-2016-003274.
- A Classification System to Guide Physical Therapy Management in Huntington Disease: A Case Series.
Fritz NE, Busse M, Jones K, Khalil H, Quinn L; Members of the Physiotherapy Working Group of the European Huntington?s Disease Network.
J Neurol Phys Ther. 2017 Jul;41(3):156-163. doi: 10.1097/NPT.0000000000000188.
- Physical Therapy and Exercise Interventions in Huntington’s Disease: A Mixed Methods Systematic Review.
Fritz NE, Rao AK, Kegelmeyer D, Kloos A, Busse M, Hartel L, Carrier J, Quinn L.
J Huntingtons Dis. 2017;6(3):217-235. doi: 10.3233/JHD-170260.
PMID: 28968244 Free PMC article. Review.
- A randomized, controlled trial of a multi-modal exercise intervention in Huntington’s disease.
Quinn L, Hamana K, Kelson M, Dawes H, Collett J, Townson J, Roos R, van der Plas AA, Reilmann R, Frich JC, Rickards H, Rosser A, Busse M.
Parkinsonism Relat Disord. 2016 Oct;31:46-52. doi: 10.1016/j.parkreldis.2016.06.023. Epub 2016 Jul 1.
PMID: 27423921 Clinical Trial.
- Reliability and minimal detectable change of physical performance measures in individuals with pre-manifest and manifest Huntington disease.
Quinn L, Khalil H, Dawes H, Fritz NE, Kegelmeyer D, Kloos AD, Gillard JW, Busse M; Outcome Measures Subgroup of the European Huntington’s Disease Network.
Phys Ther. 2013 Jul;93(7):942-56. doi: 10.2522/ptj.20130032. Epub 2013 Mar 21.
PMID: 23520147 Clinical Trial.