Burden and drivers of health-related quality of life among French and Italian caregivers of Huntington’s disease patients

Julie Dorey, Duccio Urbinati, Emilie Clay, Julie Brunet, Aimee Aubeeluck, Ferdinando Squitieri


Objective: To assess the impact of Huntington’s disease (HD) on caregivers and identify the main determinants of French and Italian caregivers’ burden, and Health related Quality of Life (HRQoL).

Methods: This cross-sectional, observational study included patients and their caregivers who were identified by national HD patients associations in France and Italy. Data on HD characteristics and (QoL) of patients and caregivers was collected using the Huntington Self-Assessment Instrument (HSAI), SF -36 and EQ-5D.

Results: The study included 175 patient caregiver pairs from France and 126 pairs from Italy. Mean age (±SD) of patients was 54.5 (±11.6). Average ages at the onset of the first symptoms and at HD diagnoses were 44.8 (±12.4) years and 46.7 (±12.0) years, respectively. The mean age (±SD) of caregivers in France and Italy was 61.31 (11.36) and 51.14 (13.18) respectively. 44% and 55% of caregivers were unsatisfied with their own happiness and 38% and 45% were unsatisfied with overall QoL in France and Italy respectively. No correlation was found between patients and caregivers HRQoL. Correlations of HDQoL-C scores with patients EQ-5D utility score ranged from 0.16 to 0. 25 and with patients SF-36 ranged from 0.11 to 0.34. Caregivers HRQoL was driven by patient voluntary movement disorder (p=0.01), patient depression/anxiety issues (p<0.01) and patient psychotic disorder (p<0.01).

Conclusion: This study captured the predictors of burden in HD caregivers and provides further insights into HD caregivers. Predictors were found to be voluntary movement disorders, depression/anxiety, and psychotic disorders, thus highlighting further insights for a correct therapeutic approach.

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