OBJECTIVES

To describe the burden of illness and major cost drivers by stage among patients with Huntington’s disease (HD), a genetic and neurodegenerative disorder.

METHODS

This is a retrospective cohort study using Truven MarketScan Commercial and Medicare Supplemental Databases. The cohort included adults with ≥1 HD claim (International Classification of Diseases-9/10-CM: 333.4, G10) between 1/1/2010 to 31/12/2017 and continuous enrolment for ≥12 months before and ≥3 months after the first HD claim (index date). Patients were followed-up till they switch health plans. An algorithm with a hierarchical assessment of markers of disease severity was applied to categorise patients into early, middle and late stages. Initial disease stage was determined using a 12-month pre-index period; patients could change stage post-index. Healthcare Resource Utilization (HRU) and costs per-member-per-month post-index were evaluated overall and by disease stage.

RESULTS

We identified 2,669 patients: 53.7% early, 25.8% middle, 20.5% late stage; the percentage of female participants in each group were 52.6%, 59.4% and 61.1%, respectively. Patient characteristics (mean [standard deviation]) for early, middle and late stage, respectively, were: age; 50.44 (15.42), 56.26 (16.57) and 63.29 (15.72); Charlson Comorbidity Index Score; 0.47 (1.18), 1.47 (2.19) and 2.57 (2.74); and follow-up time in months; 28.6 (21.56), 26.74 (20.72) and 23.84 (20.27). Median total healthcare costs/member/month differed by post-index HD stage (p<0.0001) and increased with disease severity: $442.65 for early, $1,070.59 for middle, and $2,146.56 for late stage. Mean HRU/member/month by post-index HD stage (early, middle and late, respectively) were 0.22 vs 1.17 vs 0.57 for inpatient admissions, 1.58 vs 2.95 vs 3.91 for outpatient admissions, and 1.51 vs 1.95 vs 2.48 for pharmacy fills.

CONCLUSIONS

This study highlighted the cost burden of HD on patients and the US healthcare system. HRU and costs of care increased with disease stage, emphasising the need for a disease-modifying treatment for HD.