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Clinical care and management
J14 Caregiver burden in huntington's disease
  1. E Cubo1,
  2. N P Mariscal1,
  3. C G Muñoz2
  1. 1Neurology Department, Hospital General Yagüe, Burgos, Spain
  2. 2Research Unit, Hospital General Yagüe, Burgos, Spain

Abstract

Introduction Huntington's disease (HD) is an inherited neurodegenerative disease characterized by a progressive motor and non motor decline. To date there is little information on caregiver burden in HD. The main objective of this study is to assess the caregiver burden (CB) and dependence of patients diagnosed with HD, and to analyze the main clinical variables associated with CB.

Methods Single-center, pilot longitudinal study of patients with genetically confirmed HD patients and caregivers. We evaluated the severity of motor symptoms and non motor symptoms using the Unified HD Rating Scale (UHDRS), and a structured questionnaire for CB. Correlations were analyzed using the Pearson's test. A p value <0.05 was considered statistically significant.

Results We included 26 patients with HD with a mean age of 51.8+16.1 years (57.7% women/42.3% men) and 17 caregivers (4 women, 13 men). Patients had at baseline a mean UHDRS motor score of 30.8+24.1 and UHDRS cognitive score of 170.1+98.2. The average score of CB was 22.1+15.1. The main clinical variables associated with CB were motor severity (r=0.63), cognitive impairment (r=−0.50), and depression (r=0.48).

Conclusion HD caused a significant CB. The severity of motor symptoms followed by cognitive and behavioral impairment were the main clinical variables associated with CB.

  • Caregiver burden
  • UHDRS

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