T A Mestre1, K Shannon2. 1. Parkinson's Disease and Movement Disorders Center, Division of Neurology, Department of Medicine, The Ottawa Hospital Research Institute, University of Ottawa Brain and Mind Institute, Ottawa, Canada. Electronic address: tmestre@toh.on.ca. 2. Department of Neurology, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA.
Abstract
INTRODUCTION: Huntington disease is a progressive neurodegenerative disorder without a cure. Its clinical presentation makes complex the care of patients with HD, further impacted by the progressive loss of dependence and disability. Intuitively, HD management calls for multispecialty care. METHODS: Literature review and expert-based statement. RESULTS: Chorea is the only indication for symptomatic treatments in HD. Surgical therapies are experimental, and exercise-based physical interventions have been assessed but in small feasibility studies. In HD, multispecialty care requires the active involvement of physicians, therapists, social workers and nutritionists. In about half of the HD clinics, a multidisciplinary case review is offered. It is still unknown what is the care delivery model that is best for HD. Palliative care is an important concept in HD care focusing in quality of life, considering physical, psychosocial, and spiritual problems. Palliative care may delay nursing home placement in advanced HD. CONCLUSION: There is a support for multispecialty care in HD, but more evidence needs to be generated through clinical research. The implementation of technology in the multispecialty care of patients with HD has a significant potential for reducing the care burden for families and the healthcare team, and to secure a wider care delivery.
INTRODUCTION:Huntington disease is a progressive neurodegenerative disorder without a cure. Its clinical presentation makes complex the care of patients with HD, further impacted by the progressive loss of dependence and disability. Intuitively, HD management calls for multispecialty care. METHODS: Literature review and expert-based statement. RESULTS:Chorea is the only indication for symptomatic treatments in HD. Surgical therapies are experimental, and exercise-based physical interventions have been assessed but in small feasibility studies. In HD, multispecialty care requires the active involvement of physicians, therapists, social workers and nutritionists. In about half of the HD clinics, a multidisciplinary case review is offered. It is still unknown what is the care delivery model that is best for HD. Palliative care is an important concept in HD care focusing in quality of life, considering physical, psychosocial, and spiritual problems. Palliative care may delay nursing home placement in advanced HD. CONCLUSION: There is a support for multispecialty care in HD, but more evidence needs to be generated through clinical research. The implementation of technology in the multispecialty care of patients with HD has a significant potential for reducing the care burden for families and the healthcare team, and to secure a wider care delivery.