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Huntington disease care: From the past to the present, to the future
1Parkinson'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.
Insights
Multispecialty care is recommended for Huntington disease (HD) management, but more research is needed. Technology integration in multispecialty care shows potential for easing patient and caregiver burdens.
Area of Science:
- Neuroscience
- Neurology
- Genetics
Background:
- Huntington disease (HD) is a progressive neurodegenerative disorder with no cure.
- The complex clinical presentation of HD necessitates comprehensive patient management.
- Progressive loss of independence and increasing disability complicate HD care.
Purpose of the Study:
- To review current literature and expert opinions on Huntington disease care.
- To highlight the importance of multispecialty and palliative care in HD management.
- To explore the potential of technology in improving HD care delivery.
Main Methods:
- A literature review was conducted.
- An expert-based statement was formulated.
Main Results:
- Symptomatic treatment for chorea is the only current indication.
- Multispecialty care involving physicians, therapists, social workers, and nutritionists is crucial.
- Palliative care improves quality of life and may delay nursing home placement.
- The optimal care delivery model for HD remains undetermined.
Conclusions:
- Evidence supports multispecialty care for HD, but further clinical research is required.
- Integrating technology into multispecialty care can reduce burdens on families and healthcare teams.
- Technological advancements offer potential for broader and more effective HD 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.
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