[PND40] Quality of life of caregivers in Huntington’s disease: first results from EURO-HDB study

[PND40] Quality of life of caregivers in Huntington’s disease: first results from EURO-HDB study

2010 Value in health

Dorey, J. | Clay, E. | Aubeeluck, A. | Verny, C. | Aballea, S. | Squitieri, F. | Toumi, M. | Volume: 13, Issue: 7, Pages: A395, Caregivers, Huntington Disease, poster, Quality of Life,

OBJECTIVES: Huntington’s disease (HD) is a rare neurodegenerative disease leading
to sustained disability for patients and poor quality of life (QoL) for patients as well
as caregivers. This study investigated the impact of HD on caregivers’ QoL and its
drivers. METHODS: The European HD burden study (Euro-HDB) is an ongoing
cross-sectional survey among HR patients and their caregivers in six countries (France,
Italy, Germany, UK, Sweden and Spain). The Huntington’s disease Quality of Life
Battery for Carers (HDQoL-C) short-version, a previously validated questionnaire by
Aubeeluck A. and Buchanan H., was administered. Pearson correlations with generic
HR-QOL (SF36, EQ5D) and the specifi c HR-QOL in HD for patients (HQOLI) were
evaluated. The determinants of caregiver QOL among drivers among patients’ clinical
characteristics (voluntary movement disorders, chorea, depression/anxiety, psychotic
disorder, cognition, temper) were studied by regression analysis adjusting on age, sex
and occupational categories. The relationship between QOL of patients and caregivers
were also explored. RESULTS: To date, 201 caregivers in France and 124 in Italy
have been enrolled. For France (respectively Italy) 6% (12%) were completely unsatis-
fi ed by their overall QOL and 7% (5%) were totally satisfi ed. HDQoL-C scores were
poorly correlated with generic caregiver HR-QOL: correlation equaled 0.31 for EQ5D
utility and varied between 0.04 and 0.45 for the eight domains of SF36. Correlation
was quite high (0.59; P < 0.01) between HDQoL-C and HQOLI. Drivers of caregiver's QoL were voluntary movement disorders (p = 0.049), depression/anxiety (p = 0.02), psychotic disorder (p = 0.01) and cognition (p = 0.01). Temper and chorea were not drivers of caregivers' QOL independently of other clinical characteristics. CONCLUSIONS: Caregivers QOL worsens as the patient clinical characteristics deteriorate especially voluntary movement disorders, depression/anxiety, psychotic disorders and cognition disorders. Patients and caregiver QoL was indirectly correlated via patient clinical scores. The potential impact on caregiver QOL should be considered in evaluations of innovative HD treatments.