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

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.