PND65 Spanish Neurology Therapeutic Society Guidelines for the Treatment of Relapsing Remitting MS: Are They Followed by Spanish Neurologists?

Abstract

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 (Ϯ standard deviation; SD) age of caregivers was 49 (Ϯ14) 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 (pϭ0.02, for both) but the behavioral score was not (pϭ0.18). The caregiver total QoL score was not significantly correlated with patients EQ-5D index score (pϭ0.11) and HD-specific QOL assessment, H-QOL-I (pϭ0.36). 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.