Abstract
Background: Chorea is recognized as a prototypic motor feature of Huntington’s disease (HD), but its effect on health-related quality of life (HRQoL) has not been fully explored. This study describes the impact of chorea on HRQoL in patients with HD. Objective: To determine the impact of HD-related chorea on employment, self-care activities, activities of daily living, and health-care resource utilization (HCRU). Methods: Data were drawn from the Adelphi HD Disease Specific Programme, a real-world point-in-time survey of 144 neurologists and 427 patients in the United States between July and October 2017. HD patients with and without chorea were identified and examined for differences in employment status, reasons for employment changes, self-care activities, and modifications to cope with involuntary movements. Bivariate tests and inverse probability weighted regression adjustment methods were used to determine differences in outcomes between patients with and without chorea. Results: HD patients with (n=287) and without (n=140) chorea were identified. Patients with chorea were less likely to be employed full-time (16.7% vs 25.7%; P<0.04) and more likely to be on long-term sick leave (17.4% vs 5.0%; P<0.01). The onset of motor symptoms in HD-related chorea patients coincided with a change in employment status (42.7% vs 20.8%; P<0.01). Among those still working (n=145), more than two-fifths of patients with chorea required changes to their workplace and required these changes more frequently (45% vs 17%; P<0.001). HD patients with chorea required aid to help them get around significantly more frequently than those without chorea (55% vs 34%; P<0.001). Discussion: These results demonstrate that HD patients with chorea experienced greater negative impact to employment, self-care activities, and HCRU than patients without chorea experienced. These patients were more likely to stop working due to motor, cognitive, and behavioral symptoms; require modifications in the home and workplace; and need more assistance from caregivers than patients without chorea. Conclusions: Patients with HD-related chorea have greater detriments to emotional, interpersonal, and professional functioning that could be improved by reducing chorea.
Highlights
Symptoms of Huntington’s disease (HD) typically manifest in the third to fifth decades of life through the development of motor, cognitive, and psychiatric manifestations.[1,2,3] Chorea is recognized as one of the prototypic motor features of HD, characterized by involuntary hyperkinetic movements.[4]
The onset of motor symptoms in HD-related chorea patients coincided with a change in employment status (42.7% vs 20.8%; P
HD patients with chorea required aid to help them get around significantly more frequently than those without chorea (55% vs 34%; P
Summary
Symptoms of Huntington’s disease (HD) typically manifest in the third to fifth decades of life through the development of motor, cognitive, and psychiatric manifestations.[1,2,3] Chorea is recognized as one of the prototypic motor features of HD, characterized by involuntary hyperkinetic movements.[4] Chorea is estimated to be present in about 90% of HD patients during the course of a lifespan.[5] Initially, chorea symptoms may be subtle and not associated with functional impairments, presenting as muscle twitches or fidgetiness.[6,7] As the This study describes the impact of chorea on HRQoL in patients with HD
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