Healthcare utilization and direct medical costs of Huntington’s disease among Medicaid beneficiaries in the United States

Abstract Aims To provide more recent estimates of healthcare utilization and costs in Huntington’s disease (HD) in the Medicaid population. Materials and Methods This retrospective analysis used administrative claims data for HD beneficiaries (≥1 HD claim; ICD-9-CM 333.4) from Medicaid Analytic eXtract data files from 1 January 2010–31 December 2014. The date of the first HD claim during the identification period (1 January 2011–31 December 2013) was assigned as the index date. If a beneficiary had multiple HD claims during the identification period, one was randomly chosen as the index date. Beneficiaries were required to be continuously enrolled in fee-for-service plans during the 1-year pre-index and post-index periods. Medicaid beneficiaries without HD were drawn from a 100% random sample and matched (3:1) to those with HD. Beneficiaries were classified by disease stage (early/middle/late). All-cause and HD-related (any utilization related to HD diagnosis or symptoms associated with HD) healthcare utilization and costs were reported. Results A total of 1,785 beneficiaries without HD were matched to 595 beneficiaries with HD (139 early-, 78 middle-, and 378 late-stage). The mean (SD) annual total costs were higher for beneficiaries with HD than beneficiaries without HD ($73,087 [$75,140] vs. $26,834 [$47,659], p <.001) and driven by inpatient costs ($45,190 [$48,185] vs. $13,808 [$39,596], p <.001). Total healthcare costs were highest among beneficiaries with late-stage HD (mean [SD] cost: $22,797 [$31,683] for early-stage HD vs. $55,294 [$129,290] for middle-stage HD vs. $95,251 [$60,197] for late-stage HD; p <.001). Limitations Administrative claims are intended for billing purposes and subject to coding errors. This study did not address functional status, which may provide further insight to late-stage and end-of-life burden of HD, and indirect costs. Conclusions Medicaid beneficiaries with HD have higher acute healthcare utilization and costs compared to beneficiaries without HD, which tend to increase with disease progression, indicating that HD beneficiaries at later disease stages have greater burden. PLAIN LANGUAGE SUMMARY Huntington’s disease (HD) is a degenerative genetic disorder marked by progressive decline in cognitive and motor functions, leading to severe disability and loss of independence. The median and mean survival time after a diagnosis of HD is 15 years. Little is known about the kinds of health services used or costs associated with HD in the United States (US) in the Medicaid population. The study objective was to estimate healthcare utilization and direct medical spending among Medicaid beneficiaries with HD. The mean annual total costs were higher for beneficiaries with HD than beneficiaries without HD ($73,087 vs. $26,834). Mean total healthcare costs were highest among beneficiaries with late-stage HD ($22,797 for early-stage HD vs. $55,294 for middle-stage HD vs. $95,251 for late-stage HD). Medicaid beneficiaries with HD have higher acute healthcare utilization and costs compared to beneficiaries without HD, with utilization and costs increasing with disease progression, indicating that HD beneficiaries at later disease stages have greater burden.