OBJECTIVES: Huntington’s Disease (HD) is a genetic, neurodegenerative disorder typically manifesting in mid-life; later onset (after 50 years of age) can occur. HD progression involves deterioration of cognitive and motor function, over 10-30 years following diagnosis. This study investigated healthcare utilization (HCU) and cost burden by stage of disease progression among US Medicare beneficiaries with HD.

METHODS: This retrospective study was conducted using 2013–2017 Medicare Research Identifiable Files (100%). Beneficiaries with HD were identified based on having ≥1 medical claim with a diagnosis code for HD (ICD-9-CM: 333.4; ICD-10-CM: G10) during the identification period (2014–2016); date of HD claim was defined as the index date (for multiple HD claims, 1 randomly chosen as index to capture all disease stages). Included beneficiaries had continuous enrollment in fee-for-service Medicare 1 year prior to (baseline) and 1 year after (follow-up) index. Demographics and chronic conditions were measured during baseline; HCU and costs during follow-up. Measures were stratified by disease stage (early, middle, late), determined by evidence in claims of diagnoses and services received.

RESULTS: We identified 3,688 beneficiaries with HD; the majority had late-stage disease (early 23.0%, middle 24.8%, late 52.1%). Disease strata varied by mean (SD) age (64.6 [12.2], 69.3 [11.5], 68.5 [12.7] years), proportion female (48.8%, 57.0%, 54.1%), and number of chronic conditions (4.3 [2.4], 5.5 [2.4], 6.0 [2.6]). Late-stage beneficiaries had higher use of HD treatment (42.0%, 51.4%, 64.5%), antidepressants (49.5%, 58.4%, 65.3%), anxiolytics (22.2%, 27.1%, 31.2%), and antiepileptics (30.1%, 38.4%, 45.1%); hospitalization (8.4%, 20.3%, 38.1%) and ED visits (19.8%, 36.7%, 43.1%); all p<0.001. Total healthcare costs were highest among beneficiaries with late-stage HD ($20,475 [$41,122], $29,733 [$44,977], $56,657 [$64,185]; p<0.001).

CONCLUSIONS: Medicare beneficiaries with HD have significant HCU and cost burden. HCU and costs increase with disease progression.

Study funded by F. Hoffmann-La Roche Ltd.