Impact of Chorea on Self-care Activity, Employment, and Health-care Resource Use in Patients with Huntington’s Disease

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.

Occupational performance in Huntington’s disease: A cross-sectional study

“…Regarding productivity, the participants mentioned difficulties in house management, specifically when cooking. Other authors have studied the impact of chorea on productivity, concluding that one of the most common problems experienced by HD patients is difficulties in cooking or preparing meals (Claassen et al, 2021). A study that compared the performance of people with mild PD and HD using a virtual reality tool that simulated a kitchen concluded that all participants had significant difficulties in timely completing tasks in which executive functions were required.…”

Estudio del desempeño ocupacional y validación de instrumentos de medida en la enfermedad de Huntington

“…Nuestros resultados concuerdan con el estudio de Claassen et al (209) en el que estudiaron el impacto que tenía la corea en el área de la Productividad. Concluyeron que una de las mayores dificultades percibidas era en la cocina y en concreto, en la preparación de alimentos.…”