Objective: To evaluate the impact of HD on patients’ employment status and understand its association with disease stage.

Background: Work disability is an important outcome in patients with HD of working age. It is important to identify the peak rate of work disability in the disease course and how it relates to measures of disease stage such as Total Functional Capacity (TFC).

Method: Data from individuals with manifest HD from the Enroll-HD observational study were used (Periodic Dataset 4, released 31 October 2018). Employment status at baseline (N=8,001) and reason for unemployment were summarised by TFC stage. Analyses of time-to-change of employment status included individuals who were employed throughout the study, and those who became unemployed due to reasons attributable to HD impact (n=6,598); sick leave, retirement due to illness, and retirement or unemployment due to unknown reasons. Time from clinical diagnosis to first change in employment status due to HD impact was analysed by Kaplan-Meier stratification on age groups. Weibull accelerated failure time models were used to estimate the risk associated with TFC and other clinical assessments (e.g. Total Motor Scale, Symbol Digital Modalities Test, and Stroop World Reading Test) while adjusting for confounders including region, education, age, sex, and race.

Results: At baseline visit, 47.5% of patients with TFC score 11–13 (n=2,512) were unemployed; 19.9% of them due to illness and 15.4% were on sick leave. 89.8% of patients with TFC score 7–10 (n=2,794) were unemployed; 37.8% of them due to illness and 19.7% were on sick leave. Approximately 99% of patients with a TFC score <7 were unemployed at baseline visit.
Kaplan–Meier estimates for the 18–64-year age group showed that 49.1% of patients stayed employed at clinical diagnosis. By 4 years post-clinical diagnosis, <20% patients stayed employed. Risk of unemployment was significantly lowered by higher TFC scores, being male, and higher levels of education.

Conclusion: HD impacts patients’ work ability at early stages of the disease and within a few years since clinical diagnosis. Loss of employment status is significantly related to measures of disease stage such as TFC, after adjusting for confounding factors. These findings highlight the importance of having a disease-modifying therapy available at all stages of HD to mitigate the potential impact of disease severity on employment status.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/burden-of-huntingtons-disease-hd-on-loss-of-employment-status-and-its-association-with-disease-stage/