Introducción

Es sabido que la fisioterapia es beneficiosa para la enfermedad de Huntington, pero es preciso realizar estudios que lo demuestren con intervenciones de fisioterapia y con mediciones que dicho conocimiento está basado en la evidencia. Los fisioterapeutas precisan un buen conocimiento de los problemas de los pacientes con Huntington y los datos preliminares para calcular el tamaño de la muestra necesario. También son precisos intervenciones que se centren en calcular hasta qué punto se pueden dar terapias restauradoras, compensatorias y preventivas.

Descripción

El Grupo de Trabajo de Fisioterapia pretende desarrollar guias para la evaluación en fisioterapia y para la intervención mediante la descripción de la mejor práctica clínica, consulta con expertos, medidas estandarizadas y los estudios con la mejor calidad  que puedan llevar a una mejor evidencia para los estudios de fisioterapia en la enfermedad de Huntington. El Grupo de Trabajo de Fisioterapia está trabajando en colaboración con el de Fenotipo Motor y con el de Cuidados del Paciente.

EHDN - Guia para Fisioterapeutas

Este documento para Guía de los Fisioterapeutas es un documento basado en la evidencia que pretende ser una guia que permita tener una uniformidad internacional para el cuidado e informar sobre el manejo óptimo e individualizado en fisioterapia del enfermo de Huntington. Las recomendaciones están basadas en una aproximación sistémica de recogida y revisión de la literatura actualmente disponible, así como la opinión experta dentro del Grupo de Trabajo de Fisioterapia del Grupo Europeo de Huntington. El documento final pretende ser un documento de trabajo en proceso continuo de revisión y actualización del documento a la luz de los resultados de nuevos estudios. La fecha de la publicación de la primera edición es febrero, 2010.

physiotherapy-guidance-doc-2009 

Por favor, envíenos cualquier comentario sobre este documento a través del líder del grupo de trabajo.

physiotherapy-clinical-guidelines-en 

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 version 

Danish version 

dutch-version 

Norwegian version 

Italian version 

German version 

Finnish version 

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:

• 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 Network
  Reliability 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)

Education: E-learning resource
The purpose of this project is to develop an accessible resource for caregivers and people with HD to learn about promotion of Physical activity in HD. The format of the resource and a template module is currently being developed by the leads for project (Deb Kegelmeyer and Karen Jones) with ongoing consultation from members of PWG. This is to be presented at the next PWG meeting in May 2015 for discussion. Following the meeting, components of the resource will be developed by sub-groups formed within the PWG. The timeline for completion of this project will be agreed at the meeting in May 2015.

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). The case studies completed to date can be found at: https://healthcarestudies.cf.ac.uk/ActiveHD/case-studies/

International Research Summaries
The Active-HD website has a page dedicated to International Research Summaries which the Physiotherapy Working Group continue to develop by providing research summaries from international studies, both peer-reviewed papers and abstracts, related to physical therapy and exercise in Huntington’s disease. It is important to continue to develop this as an informative resource for people in the HD community including PWG members, carers, clinicians and people with HD.

Lead Facilitators

Katy Hamana
Physiotherapist, Research Assistant
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:

Karen Jones
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) 20687789
Email:

Associated Language Area Coordinator (Lanco)

, UK
Paola Zinzi, IT (backup Lanco)

The Physiotherapy Working Group has currently 55 members (October 2014), including physiotherapists based in the UK, Sweden, Norway, Finland, Portugal, Spain, Switzerland, Germany, Italy and USA. The aims of the working group can best be met by the coordination of input from a network of people with an expertise and/or interest in physiotherapy and rehabilitation for people with HD. Any clinicians with an interest or expertise in HD, as well as in rehabilitation or physiotherapy, are welcome to join the group.