The physiotherapy working group was established in 2006 and comprises
a diverse international community of 55 physiotherapists, other allied health
care professionals and family members of people with Huntington’s disease.
Those in the working group are active members of the HD community.
To this end members of the group have completed a number of projects with the
aim of better understanding HD and the how best to facilitate independence and
quality of life for people with HD. Achievements of the group include having developed
guidelines for physiotherapy evaluations and intervention, investigated standardised
outcome measures, and provided clinical tips to facilitate independence in HD. Due
to the evidence base for physical activity in HD that has been developed over
the last 10 years, the PWG has most recently been able develop an evidence
based online resource to support physical activity in HD in collaboration with
the European Huntington’s Association. In addition to this, many members have
been involved in designing high quality trials that have led to more evidence
for provision of physiotherapy interventions in HD.
The PWG aims to engage physiotherapists and other allied
healthcare professionals working with people with HD to work collaboratively
and continue to disseminate output particularly related to Physical Activity/
exercise in HD, which will lead to positive impact for healthcare professionals
and caregivers in the HD community.
Completed projects Promoting active lifestyles in Huntington’s DiseaseThe growing evidence base for the positive benefits of exercise in HD has led to some exciting developments in recent years. Physiotherapy working group members have been busy developing a freely accessible online resource to support more active lifestyles in HD over the last two years. This resource provides information, signposting to other helpful resources, videos, fact sheets and more, all with a focus on physical activity in HD. The robust resource is underpinned by research evidence and in particular the ENGAGE-HD study (https://academic.oup.com/ptj/article-lookup/doi/10.1093/ptj/pzx031) provided important conceptual underpinning as well providing the physical activity workbook. The PWG has developed an innovative, exciting collaboration with the European Huntington’s Association who host the resource on their website as an important part of the ‘HD on the Move’ project. The resource can be accessed via this link: http://eurohuntington.org/active-huntingtons/We hope that the resource will have a positive impact on people’s lives and now that the resource is live, a subgroup will work to evaluate it and continue to improve its content and functionality. Users are being invited to complete a short survey sharing their thoughts and experiences of using the resource: https://osu.az1.qualtrics.com/jfe/form/SV_eWkDZ9CcU6nChAp Huntington’s Disease Physical Therapy Systematic Review and Clinical Guidelines Development In 2009, the Physiotherapy Working Group of EHDN developed a Physiotherapy Guidance Document designed to provide therapists with information and recommendations for physiotherapy standards of care for people with Huntington’s disease. The Guidance Document was based on expert opinion and the available literature at the time, which involved a small number of mostly descriptive studies. Since 2009, there has been a significant increase in the number and quality of physical therapy and exercise studies in HD. While the EHDN Guidance Document was an important first step to providing information about patient management in this relatively rare disease, we are now at a point that a more systematic approach can be taken to developing rigorous clinical guidelines. A group of seven physical therapists with expertise in Huntington’s disease began work to: 1) complete a systematic review of the effectiveness of physical therapy and exercise in Huntington’s disease; and 2) to utilize this review to develop physical therapy clinical guidelines. The clinical guidelines group will incorporate a wider international group of approximately 15 clinicians and therapists who will contribute to writing and reviewing the guidelines. As of July 2017, the protocol for the systematic review has been accepted for publication: Quinn L, Kegelmeyer D, Fritz N, Kloos A, Rao A, Hartel L, Carrier J, Busse ME. Physical therapy and exercise interventions in Huntington's disease: a mixed methods systematic review protocol. Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports 2017. 15(7). The systematic review has been completed and is being submitted to the Journal of Huntington’s disease. The anticipated date of publication for the clinical guidelines is December 2017.Clinical Case StudiesThese have been developed by members of the Physiotherapy Working Group to aid in the assessment and treatment planning of individuals with HD across all stages of the disease. These cases follow the treatment-based classifications developed by the working group (Quinn, Busse & Physiotherapy Working Group, 2012) and have been published as a case series which can be accessed via this link: https://osu.az1.qualtrics.com/jfe/form/SV_eWkDZ9CcU6nChAp Alternatively, the three case studies of early, mid and late stage HD can be found here or if you are a member of the APTA, they are also on the PT NOW webpages:<insert doc case studies doc>
Guidelines for Physiotherapists
This Physiotherapy Guidance Document is an evidence-based document that aims to
enable international uniformity of care and inform the optimal, individualised
physiotherapeutic management of people with HD. Recommendations were formulated
based on a systematic approach to gathering and reviewing currently available
literature as well as gathering expert consensus from within the EHDN
Physiotherapy Working Group. Date of publication of first edition: February
Please send any feedback on content of this document to the lead facilitators
of the working group.
EHDN Physiotherapy Guidance short document
EHDN French Physiotherapy Guidance short document
Voici ci-dessous la version courte en français du Guide de Physiothérapie EHDN.
Si vous désirez écrire vos commentaires en français, merci de les envoyer à Laurent Paterski (email@example.com
), coordinateur France-Suisse-Belgique.
Kliniske Retningslinjer for Fysioterapi ved Huntingtons Sygdom
Nederlandse versie van de fysiotherapie richtlijnen bij de Ziekte van Huntington
Anbefalte Retningslinjer for Klinisk Fysioterapi
Linee guida cliniche di fisioterapia per la malattia di Huntington
German version of clinical physiotherapy guidelines
Eurooppalainen Huntingtonin taudin tutkijaverkosto (EHDN) Fysioterapia-työryhmä
Version 3 Physiotherapy Outcome Measures Study
Dr. Monica Busse, Dr Lori Quinn, EHDN Physiotherapy Working Group
Funded by European Huntington’s Disease Network
The purpose of this project was to determine the reliability and minimal
detectable difference of various outcome physiotherapy for people measures that
are potentially suitable for evaluating the benefits of with HD. We recruited
75 people with Huntington’s disease in various stages of the disease across 7
international sites. All participants completed two assessments, with a
one-week gap between, on a battery of functional outcome measures. Measures
were chosen to reflect a range of impairments, activity limitations and
participation restrictions seen in people with HD that may be potentially
modifiable with physiotherapy intervention.
- Busse M,
Quinn L, Khalil H, McEwan K. Optimizing
mobility measures in Huntington’s disease. Journal of Huntington’s
Disease, J Huntingtons Dis. 2014;3(2):175-88.
- Quinn L,
Khalil H, Dawes H, Fritz N, Kegelmeyer D, Kloos A, Gillard J, Busse M, and
the Physiotherapy Working Group of the European Huntington’s Disease
and minimal detectable change of physical performance measures in
individuals with premanifest and manifest Huntington’s disease , Phys
Ther. 2013 Jul;93(7):942-56. Available online (doi: 10.2522/ptj.20130032)
Lecturer in Physiotherapy
School of Healthcare Sciences
College of Biomedical and Life Sciences
Tŷ Dewi Sant
Tel: +44 (029)20 687841
Noit Inbar, BPT, MA (Gerontology),
Huntington's Disease Clinic Coordinator,
Movement Disorders Unit, Department of Neurology,
Tel Aviv Medical Center,
Tel Aviv, Israel.
Associated Language Area Coordinator (Lanco)
Paola Zinzi, IT