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Euro Huntington's disease network [logo]
Working Groups - Physiotherapy -

Background

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.

 The lead facilitators of the group are  Katy Hamana (debonok1@cf.ac.uk) and Karen Jones (joneskj@cf.ac.uk).


Completed projects
Promoting active lifestyles in Huntington’s Disease
The 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 Studies
These 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>

http://www.ptnow.org/

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EHDN 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 2010.

Please send any feedback on content of this document to the lead facilitators of the working group.

application/pdfphysiotherapy-guidance-doc-2009 
To order your personal copy of the brochure write an email to

EHDN Physiotherapy Guidance short document

EHDN French Physiotherapy Guidance short document

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Please find below the french short version of the EHDN Physiotherapy Guidance document. Please send any feedback on content of this document to the lead facilitators of the Working Group.

French Physiotherapy Guidance short

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

Registry Version 3 Physiotherapy Outcome Measures Study
Dr. Monica Busse, Dr Lori Quinn, EHDN Physiotherapy Working Group (multi-centre)
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.

 
Related publications:


Contacts

Contacts
Lead Facilitators:
Katy Hamana
Lecturer in Physiotherapy
School of Healthcare Sciences
College of Biomedical and Life Sciences
Cardiff University
Tŷ Dewi Sant
Heath Park
Cardiff
CF14 4XN
Tel: +44 (029)20 687841
Email:
debonok1@cardiff.ac.uk

Karen Jones
Senior Lecturer in Physiotherapy,
MSc Physiotherapy Programme Manager
School of Healthcare Sciences
College of Biomedical and Life Sciences
Cardiff University
Ty Dewi Sant
Heath Park
Cardiff
CF14 4XN
Tel: +44 (029) 20687708
Email:
joneskj@cardiff.ac.uk

Associated Language Area Coordinator (Lanco)
Paola Zinzi, IT