QUALITY OF LIFE OF SPANISH FAMILY CARERS IN HUNTINGTON'S DISEASE

Author(s)

Urbinati D1, Dorey J2, Trigo P3, Yebenes J3, Toumi M41Creativ-Ceutical, Luxembourg, Luxembourg, 2Creativ Ceutical, Paris, France, 3Hospital Ramón y Cajal, Madrid, Spain, 4University Claude Bernard Lyon 1, Lyon, France

OBJECTIVES: Huntington’s disease (HD) is a rare neurodegenerative disease leading to sustained disability for patients, and poor quality of life (QoL) for patients and their caregivers. This study, conducted in Spain as a part of an international survey, investigated the QoL of family carers of patients with HD.  METHODS: The hospital ‘Hospital Ramon y Cajal’ provided their patients with two self-reported questionnaires (one for patient and one for his/her caregiver). Caregivers were asked to answer sociodemographic questions and complete the short version of the HD Quality of Life Battery for Carers (HDQoL-C), a previously validated questionnaire by Aubeeluck A. and Buchanan H. The determinants of caregiver QoL relating to patients’ clinical characteristics (motor, functional, behavioural disorders) were studied by regression analysis, adjusting for age, sex and occupational categories. The relationship between QoL of patients and caregivers was also explored using Pearson’s correlations. RESULTS: Sixty caregivers and 59 patients were included. The mean (± standard deviation; SD) age of caregivers was 49 (±14) years and 73% were female. 10% were completely unsatisfied with their overall QoL and 12% were totally satisfied. Patients’ motor score and functional score were found to be drivers of the Spanish caregivers’ QoL (p=0.02, for both) but the behavioral score was not (p=0.18). The caregiver total QoL score was not significantly correlated with patients EQ-5D index score (p=0.11) and HD-specific QOL assessment, H-QOL-I  (p=0.36). CONCLUSIONS: Caregiver’s QoL worsens as patient motors’ symptoms and functional capacity deteriorate. Patient and caregiver QoL was not directly correlated. A limitation of this study is the low sample size; HD is a rare disease, which made it difficult to recruit large sample.

Conference/Value in Health Info

2012-11, ISPOR Europe 2012, Berlin, Germany

Value in Health, Vol. 15, No. 7 (November 2012)

Code

PND61

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Neurological Disorders, Respiratory-Related Disorders

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