Objective: To examine healthcare utilization (HCU) and costs occurring at the end of life among deceased Medicare beneficiaries who were diagnosed with Huntington’s disease (HD).

Background: HD is a genetic, neurodegenerative disease characterized by a progressive decline in cognitive and motor functions, and episodical behavioral symptoms. The onset of HD typically occurs when people are in the prime of life, with late onset occurring after 60 years of age. The median survival following clinical onset is 15 years.

Method: This retrospective study investigated end-of-life HCU and costs among Medicare beneficiaries using 2013–2017 Medicare Research Identifiable Files (100%). Beneficiaries were identified if they had a diagnosis of HD, defined by the presence of ≥1 medical claim with a diagnosis code for HD (ICD-9-CM: 333.4; ICD-10-CM: G10) during 2013–2017 and died between 2014–2017. The date of death was defined as the index date. All patients were required to have continuous enrollment in Medicare fee-for-service (FFS) Parts A/B and Part D in the 1 year preceding the index date (baseline period). Stage of disease (early, middle, late) and comorbidities were measured during baseline; HCU and costs were measured in the quarter immediately preceding death (Q1) and just prior (Q2).

Results: We identified 6,289 beneficiaries diagnosed with HD who died between 2014–2017, of whom 1,687 were continuously enrolled during baseline. Mean (standard deviation, SD) age at death was 73.2 (12.9) years, and beneficiaries were half (50.3%) female, 91.6% white, and mostly in late stage of HD (89.7%). Beneficiaries had a mean (SD) Charlson comorbidity index of 4.4 (4.0) and, on average, 7.5 (3.0) reported chronic conditions. In the two quarters (Q1, Q2) preceding death, hospitalization (48.7%, 20.0%) and emergency department visits (30.8%, 20.3%) were common among beneficiaries, as was use of HD treatment (45.9%, 48.9%), antidepressants (46.7%, 48.7%), antiepileptics (34.4%, 34.6%), and anxiolytics (23.3%, 21.2%). Mean (SD) total costs in this period were $28,145 ($31,932) and $17,348 ($24,759), respectively, primarily driven by inpatient costs.

Conclusion: HD is associated with substantial HCU and costs at the end of life, with the greatest resource utilization intensity transpiring in the final few months of life.
Study funded by F. Hoffmann-La Roche Ltd.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/healthcare-utilization-and-cost-burden-at-the-end-of-life-among-medicare-beneficiaries-with-huntingtons-disease/