Objective: To investigate comorbidities, hospitalizations, and mortality in patients newly diagnosed with Huntington’s disease using data extracted from three linked Swedish national health registries from 2000-2019.

Background: Given the rarity of HD, large cohort studies are warranted to better understand the clinical burden in a secondary healthcare setting.

Method: A nationwide retrospective cohort study was conducted using linked data from the Swedish National Patient Registry, the Prescription Drug Registry, and the Cause of Death Registry. All patients with a first diagnosis of HD (ICD-10: G10) between 2002 and 2018 were included. Patient characteristics were described at first HD diagnosis (index), and incidence rates of pre-specified comorbidities were identified using ICD-10 codes and were described from HD index until first clinical event (or death, emigration or end of data availability, whichever came first). The proportion of patients with ≥1 hospitalisation and the proportion that died were described, as well as the top ten causes of both hospitalisation and death. Kaplan-Meier methods and long-rank test were used to describe time to death stratified by sex.

Results: Incident HD patients (N=1,492) had a median age of 56 years (first to third quartile [Q1-Q3]: 42−68), 50% were male, 26% had a Charlson Comorbidity Index score ≥ 1, and 25% lived in Stockholm (Figure 1). Median (Q1-Q3) follow up time was 8 (4­­-13) years. Following the first HD diagnosis, the most common comorbidities included hypertension, gastrointestinal events and depression (Table 1). 1,020 (68.4%) of patients had ≥1 hospitalisation and 556 (55%) patients died during the total available follow-up. The leading causes of hospitalisations were diseases of nervous system, mental and behavioural disorders, and respiratory conditions (Figure 2), and the leading cause of death was HD (Figure 3). Median time to death was shorter in males (11.3 years) than in females (13.7 years; Figure 4).

Conclusion: This study sheds light on the epidemiology and clinical burden of HD using highly robust, linked population data sources. Further work is underway to compare the rate of clinical outcomes in a matched cohort from the general Swedish population without HD.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/characterising-the-incidence-of-comorbidities-hospitalisations-and-death-in-patients-diagnosed-with-huntingtons-disease-a-cohort-study-of-linked-swedish-national-registries-2002-2019/