Research has established that Physiotherapy is recommended for people with Huntington’s disease (HD), as part of a multidisciplinary approach. Individual planning facilitates a cooperative partnership between the patient and healthcare provider and is based on disease-specific assessments and goal setting.
We have developed an HD-specific screening form and practice pathway that considers level of function, disease stage, physical activity, risk of falls and balance with the overall aim of highlighting treatment principles and formulating a treatment plan. Core to this top-down approach, is the consideration of roles and participation needs of the individual, disease stage and subsequent impact on management. This is intended to facilitate a short, focused assessment of the individuals’ functional level, contributing impairments, participation levels and disease stage. The practice pathway aims to inform treatment recommendations that can be shared with local healthcare teams. Sharing knowledge of the patients’ functional capacities and subjective concerns will enhance patient-centred development of further intervention plans.
Experience and knowledge of different healthcare systems (UK, USA & Israel), suggests that in most HD clinics, with professionals from all clinical fields, physiotherapists are involved mainly in research (e.g. Enroll-HD). Physiotherapy treatment is usually provided by local health organisations. By introducing the HD-specific screening form and clinical pathway, we hope to create a bridge between clinicians whose knowledge and expertise are focused on HD, and their colleagues in local healthcare teams, who seldom treat people with HD. Validation of the functional screening is planned and will be assessed through piloting with patients in the HD clinics in the UK, USA and Israel and by review by physiotherapists in the wider healthcare systems.
- ‘Huntington’s disease’
- ‘screening form’
- ‘practice pathway’
- ‘Huntington’s disease Functional Ambulation Classification (HD-FAC)’