Genentech Inc, South San Francisco, California, USA.
Partnership for Health Analytic Research (PHAR), LLC, Beverly Hills, California, USA.
Neuroepidemiology. 2022;56(3):192-200. doi: 10.1159/000524732. Epub 2022 Apr 28.
Huntington's disease (HD) is a rare, genetic, and ultimately fatal neurodegenerative disease, with a devastating impact on individuals and families across generations. Few estimates of HD epidemiology in the United States (US) exist.
This study employed a retrospective cross-sectional design to examine the epidemiology of HD in the US Medicare and Medicaid beneficiary populations using 2016-2017 claims data from the Medicare 100% Research Identifiable Files (RIFs) and 2014 claims data from the Medicaid Analytic eXtract (MAX) files for 17 states. Medicare beneficiaries ≥65 years with a diagnosis of HD (≥1 claim with ICD-10-CM code G10) in 2017 and Medicaid beneficiaries <65 years with a diagnosis of HD (≥1 claim with ICD-9-CM code 333.4) in 2014 were identified. The study outcomes included the 2017 prevalence proportion and incidence rate of HD in the Medicare population and the 2014 prevalence proportion of HD in the Medicaid population.
In the Medicare population, 1,941 prevalent and 819 incident cases of HD were identified in 2017, corresponding to a prevalence proportion of 13.1 per 100,000 persons and incidence rate of 6.1 per 100,000 person-years. In the Medicaid population, 353 prevalent cases of HD were identified in 2014, corresponding to a prevalence proportion of 15.2 per 100,000 persons.
This study suggests that prevalence and incidence of HD in the US may be higher than previously estimated. This has important implications in raising awareness of HD among providers and payers and ensuring availability of and access to services for HD patients and care partners in the Medicare and Medicaid populations.
亨廷顿病（HD）是一种罕见的遗传性神经退行性疾病，对各世代的个人和家庭都有毁灭性的影响。美国（US）对 HD 流行病学的估计很少。
本研究采用回顾性横断面设计，使用来自 Medicare 100% Research Identifiable Files（RIFs）的 2016-2017 年索赔数据和来自 Medicaid Analytic eXtract（MAX）文件的 2014 年索赔数据，对美国 Medicare 和 Medicaid 受益人群中的 HD 流行病学进行了研究，该研究共纳入了 17 个州的数据。2017 年 Medicare 受益人群中诊断为 HD（≥1 次 ICD-10-CM 代码 G10 编码的诊断）且年龄≥65 岁，以及 2014 年 Medicaid 受益人群中诊断为 HD（≥1 次 ICD-9-CM 代码 333.4 编码的诊断）且年龄<65 岁的患者被纳入本研究。研究结果包括 Medicare 人群中 2017 年 HD 的患病率比例和发病率以及 Medicaid 人群中 2014 年 HD 的患病率比例。
在 Medicare 人群中，2017 年共发现 1941 例现患和 819 例新发 HD 病例，患病率比例为 13.1/100000 人，发病率为 6.1/100000 人年。在 Medicaid 人群中，2014 年共发现 353 例现患 HD 病例，患病率比例为 15.2/100000 人。
本研究表明，美国的 HD 患病率和发病率可能高于此前的估计。这对于提高医疗服务提供者和支付者对 HD 的认识，确保 Medicare 和 Medicaid 人群中 HD 患者及其护理伙伴能够获得和使用相关服务具有重要意义。
