Objective: To describe Huntington’s Disease (HD) epidemiology in Israel and depict comorbidities and longitudinal healthcare resources utilization.

Background: HD is a rare, inherited neurodegenerative disorder, for which the real-life longitudinal complexity of disease management has so far been inadequately described on a population level. This study utilized the computerized, comprehensive database of Maccabi Healthcare Services (MHS), a nationally representative insurer and provider of 25% of Israel’s population [1].

Method: “eNLIGHTEN” is a retrospective population-based study capturing HD patients diagnosed by community neurologists or hospitals between 2000-2019. Index date was defined at first HD diagnosis. HD cohort was described in terms of demographics, HD genetic testing (Y/N), smoking, baseline and follow-up diagnoses and all-cause mortality. Healthcare resource utilization including hospitalizations, ER visits, home visits, and ambulatory care consultations was assessed at periods of ≤ 1 year, 1-5 years and 5-10 years after index date.

Results: A total of 115 HD patients were identified during the 20-year study period. Mean age at diagnosis was 51 years (SD=13.4) and 56% were female. Median survival rate after diagnosis was 11 years (95% CI: 8.3-13.5). The 20-year HD cumulative incidence was 3.3 per 100,000 MHS members and the prevalence on December 2019 was 2.8 per 100,000 MHS members. Genetic testing for HD was performed in 44% of the HD cohort (available in MHS since mid-2002). At baseline 15% of the patients were ever smokers and the most frequently documented comorbidities included anxiety (43%) and falls (14%). The 10-year cumulative incidence rates of mild cognitive impairment and dementia were 7% and 16%, respectively. Twenty four percent of the patients developed sleep disorder post-index diagnosis. Healthcare resource utilization increased as the disease progressed with generally consistent trends across ER visits, ICU hospitalizations, home visits, ophthalmology, psychiatric, occupational, speech and physical therapy consultations.

Conclusion: The prevalence of HD in Israel is consistent with global estimates and previously published literature [2]. Management of this complex disease requires considerable healthcare resources and increases as the disease progresses.

References: 1. Cohen R and Damari N. 2018. Membership in Sick Funds 2017. National Insurance Institute of Israel, 2018. Retrieved September, 2019, from https://www.btl.gov.il/Publications/survey/Documents/seker_303.pdf (in Hebrew). 2. Kay C, Hayden MR, Leavitt BR. Epidemiology of Huntington disease. Handb Clin Neurol. 2017;144:31-46.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/huntingtons-disease-in-israel-20-years-of-follow-up-from-maccabi-healthcare-services/