OBJECTIVES: Huntington’s disease (HD) is a rare neurodegenerative disease leading
to sustained disability and poor health-related quality of life (HRQOL). As new treatments
are in development for HD, data on the burden of disease are required. This
study evaluated patient health status, patient and caregiver HRQoL and costs in HD.
METHODS: Euro-HDB is a European cross-sectional survey being conducted in eight
European countries. Self-reported questionnaires were completed by patients and caregivers.
The patient questionnaire includes the Huntington Self-Assessment Instrument,
a specifi c tool that assesses clinical characteristics, HRQoL and health care resource
utilization. The EQ5D questionnaire and the SF36 Survey are also included. RESULTS:
To date, 201 patients have been enrolled in France and 124 in Italy.
All levels of disease severity are represented. Average annual costs from societal
perspective are c5,325 (±9588), c18,045c (±34487) and c41,716 (±35211) at mild,
moderate and severe stages respectively in France; c3,125 (±4319), c8,457 (±18374)
and c5,069 (±11747) in Italy. Associated EQ-5D utilities are respectively 0.79 (±0.18),
0.39 (±0.37), -0.11 (±0.3) in France; 0.59 (±0.44), 0.39 (±0.42), 0.25 (±0.44) in Italy.
The primary cost driver is productivity loss. In France, hospitalization and nursing
home costs are the main components of direct costs. For more severely affected patients,
medical resource utilization diminishes while caregiver involvement increases signifi –
cantly (the shift is greater in Italy than France). Physical, mental and social HRQoL
domains are all seriously affected. CONCLUSIONS: Euro-HDB is the fi rst study to
comprehensively assess the cost and HRQOL burden of HD. The 1:5 cost ratio
(Italy : France) is consistent across most of the cost items, suggesting that differences in
health care systems, access to health care and cultural attitudes towards caring for
patients at home have a large impact on a country’s overall costs. Results suggest that
HD has greater impact on HRQOL than Parkinson’s disease and Alzheimer’s disease.