Abstract
BackgroundHuntington’s disease (HD) is a devastating and fatal neurodegenerative disorder that leads to progressive disability, and over time to total dependence. The economic impact of HD on patients living in developing countries like Peru is still unknown. This study aims to estimate the economic burden by estimating direct and indirect costs of Huntington’s disease in Peru, as well as the proportion of direct costs borne by patients and their families.MethodsDisease-cost cross-sectional study where 97 participants and their primary caregivers were interviewed using a common questionnaire. Prevalence and human capital approaches were used to estimate direct and indirect costs, respectively.ResultsThe average annual cost of HD reached USD 8120 per patient in 2015. Direct non-healthcare costs represented 78.3% of total cost, indirect costs 14.4% and direct healthcare costs the remaining 7.3%. The mean cost of HD increased with the degree of patient dependency: from USD 6572 for Barthel 4 & 5 (slight dependency and total independency, respectively) to USD 23,251 for Barthel 1 (total dependency). Direct costs were primarily financed by patients and their families.ConclusionsThe estimated annual cost of HD for Peruvian society reached USD 1.2 million in 2015. The cost impact of HD on patients and their families is very high, becoming catastrophic for most dependent patients, and thus making it essential to prioritize full coverage by the State.
Highlights
Huntington’s disease (HD) is a devastating and fatal neurodegenerative disorder that leads to progressive disability, and over time to total dependence
As there is no national registry of HD prevalence in Peru, we cannot make an accurate calculation of societal cost of HD
We may estimate a low threshold by assuming that the national prevalence is in line with the minimal prevalence rate reported for Latin America (0.35 per 100,000 inhabitants, based on the community-based prevalence of HD in Venezuela) [7] and by taking into consideration that the estimated prevalence in the Valley of Cañete is 40 per 100,000 inhabitants [9]
Summary
Huntington’s disease (HD) is a devastating and fatal neurodegenerative disorder that leads to progressive disability, and over time to total dependence. The economic impact of HD on patients living in developing countries like Peru is still unknown. This study aims to estimate the economic burden by estimating direct and indirect costs of Huntington’s disease in Peru, as well as the proportion of direct costs borne by patients and their families. Huntington’s disease (HD) is a monogenetic, neurodegenerative disorder that leads to progressive disability and eventually to full dependence [1]. Age at onset spans from early childhood to senescence, typical HD onset occurs in middle-aged patients [2]. HD symptoms are characterized by the triad of choreic movements, cognitive impairment, and psychiatric symptoms [3].
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