To identify the socioeconomic burden of Huntington’s disease (HD) in 7 European countries and the United States (US). This study aims to assess the burden of illness (BOI) from various perspectives (patient/caregiver), including quality of life (QoL).
HD is a rare, progressive, neurodegenerative disorder. HD exerts a substantial burden on the health-related quality of life (HRQoL) of patients and their caregivers, yet the BOI of the disease has not been well-quantified. Such information is of critical importance to health care authorities, and required to guide disease-management decisions, development of health care policies, and access to new therapies.
A cross-sectional survey of HD patients was conducted in the UK, Germany, Italy, France, Poland, Spain, Sweden, and was subsequently extended to the US. Data from clinical assessments, QoL, health resource utilization, productivity and caregiver burden were collected using patient- and caregiver-reported questionnaires developed for HD.
Across countries, patients were quite similar with respect to disease severity, except US patients, who were of milder severity. This allowed for comparisons between countries. Although medical treatment was the biggest driver of cost globally, indirect costs also varied considerably. Poland and Italy had the lowest level of resource utilization; France, the highest. Poland and Italy also had the highest levels of patient unemployment and required more caregiver involvement. Thus, countries that use modest public resources tend to compensate with significantly more caregiver responsibility.
This is the first, comprehensive international study quantifying HD burden. Although caution is warranted in interpreting these data, the results indicate that HD is indeed, costly both in economic and humanistic terms. Significant differences in BOI exist globally, as it relates to resource utilization, health care access, and patient HRQoL. BOI data are important to inform health care policy and treatment decisions in HD.