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Physical Therapy Intervention for People With Huntington Disease

ME Busse, PhD, is Lecturer, Department of Physiotherapy, School of Health Care Studies, Cardiff University, Ty Dewi Sant, Heath Park, Cardiff CF14 4XN, Wales, United Kingdom.
H Khalil, MSc, is Lecturer, Faculty of Applied Medical Sciences, Jordan University of Science and Technology, Irbid, Jordan.
L Quinn, PT, EdD, is Honorary Research Fellow, Department of Physiotherapy, School of Health Care Studies, Cardiff University, and Senior Lecturer, Program in Physical Therapy, School of Public Health, New York Medical College,Valhalla, NY.
AE Rosser, PhD, is Professor of Clinical Neuroscience, Departments of Neurology and Medical Genetics, School of Medicine, Cardiff University, and Brain Repair Group, School of Biosciences, Cardiff University.

busseme{at}cardiff.ac.uk

Background and Purpose: The clinical symptoms of Huntington disease (HD) include progressive movement disorders, cognitive deficits, and behavioral changes, all of which affect an individual's ability to participate in activities of daily living. To date, very few quantitative or qualitative studies have been conducted to guide physical therapists working with people with HD. The objective of this study was to characterize current physical therapist practice for people with HD, thus informing the development of standardized clinical care and future research studies.

Subjects and Methods: Consultation with physical therapists working with people with HD was undertaken in the form of mailed questionnaires (n=49) and semistructured interviews (n=8). The development of the interview schedule was aided by consideration of the data obtained from the questionnaires. Themes identified from the interviews were considered in light of published literature and questionnaire responses.

Results: The main issues that emerged from the interviews were classified into 3 subthemes: (1) there is insufficient use of routine physical therapy–related outcome measures at different stages of HD, (2) there is underutilization of physical therapy services in managing HD (particularly in the early stages), and (3) the management of falls and mobility deficit progression is a key treatment aim for people with HD.

Discussion and Conclusion: A conceptual framework for physical therapy intervention in HD was developed on the basis of the themes that emerged from the data in this study. Such a framework has utility for complex, progressive conditions such as HD and may facilitate clinical decision making and standardization of practice and affect the development of future physical therapy trials.