The direct medical costs of Huntington's disease by stage. A retrospective commercial and Medicaid claims data analysis

J Med Econ. 2013 Aug;16(8):1043-50. doi: 10.3111/13696998.2013.818545. Epub 2013 Jul 5.


Objective: This study quantified the direct healthcare costs and major cost drivers among patients with Huntington's disease (HD), by disease stage in commercial and Medicaid databases.

Methods: This retrospective database analysis used healthcare utilization/cost data for HD patients (ICD-9-CM 333.4) from Thomson Reuters' MarketScan Commercial and Medicaid 2002-2009 databases. Patients were classified by disease stage (Early/Middle/Late) by a hierarchical assessment of markers of disease severity, confirmed by literature review and key opinion leader input. Costs were measured over the follow-up time of each patient with total costs per patient per stage annualized using a patient-year cost approach.

Results: Among 1272 HD patients, the mean age was similar in commercial (752 patients) and Medicaid (520 patients) populations (48.5 years (SD = 13.3) and 49.3 years (SD = 17.2), respectively). Commercial patients were evenly distributed by stage (30.5%/35.5%/34.0%; Early/Middle/Late). However, most (74.0%) Medicaid HD patients were classified as Late stage. The mean total annualized cost per patient increased by stage (commercial: $4947 (SD = $6040)-$22,582 (SD = $39,028); Medicaid: $3257 (SD = $5670)-$37,495 (SD = $27,111). Outpatient costs were the primary healthcare cost component. The vast majority (73.8%) of Medicaid Late stage patients received nursing home care and the majority (54.6%) of Medicaid Late stage costs were associated with nursing home care. In comparison, only 40.6% of commercial Late stage patients received nursing home care, which contributed to only 4.6% of commercial Late stage costs.

Conclusions: The annual direct economic burden of HD is substantial and increased with disease progression. More late stage Medicaid HD patients were in nursing homes and for a longer time than their commercial counterparts, reflected by their higher costs (suggesting greater disease severity). Key limitations include the classification of patients into a single stage, as well as a lack of visibility into full long-term care/nursing home-related costs for commercial patients.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Disease Progression
  • Female
  • Health Services / economics*
  • Health Services / statistics & numerical data*
  • Humans
  • Huntington Disease / economics*
  • Huntington Disease / physiopathology
  • Insurance Claim Review / statistics & numerical data
  • Insurance, Health / statistics & numerical data*
  • Long-Term Care / economics
  • Male
  • Medicaid / statistics & numerical data*
  • Middle Aged
  • Models, Economic
  • Retrospective Studies
  • Severity of Illness Index
  • United States
  • Young Adult