BACKGROUND:

Huntington’s disease (HD) is a rare, genetic, neurodegenerative, chronic illness characterised by a decline in functional abilities, cognitive impairment, and disordered movements. Onset of symptoms in HD-affected individuals inevitably leads to job skill loss and early unintended retirement.

OBJECTIVES:

We aimed to assess the impact on unemployment due to HD disease severity.

METHODS:

We performed a cross-sectional analysis using the Enroll-HD dataset (PDS5, 2020 release). The total functional capacity (TFC)-scores of 13 (maximum) and 12 were compared to evaluate the impact on employment of early-stage HD. The sample consisted of adults with manifest HD Diagnostic Confidence Level (DCL=4) at baseline visit, 18 years and above. Employment status was categorised as full-time employment (FTE), part-time employment (PTE), self-employment (SE), or not employed (NE). For missing data, no imputations were performed.

RESULTS:

At baseline, among those within the TFC-13 grouping (n=1,251), 60% (n=747) were in FTE, 12% (n=152) in PTE, 4% (n=47) in SE, and 24% (n=302) were NE. The TFC-12 group (n=1,131) employment breakdown was 32% (n=363) in FTE, 16% (n=178) in PTE, 3% (n=34) in SE, and 49% (n=556) were NE. The cumulative percentage of any form of employment was 76% in the TFC 13 group, and 51% within the TFC 12 group. There was 25% lower employment within the TFC 12 group compared to the TFC 13 group. A Chi-squared test showed a statistically significant difference (p<0.001) between employment and TFC 13-12 groups.

CONCLUSIONS:

Our study indicates that employment status is associated with HD severity. Even at early stages of HD, a substantial disparity can be observed in employment, related to a notable decline in functional capacity from TFC 13 to TFC 12 groups. Loss of employment in early stages of HD could lead to increased dependency on friends or family, which snowballs into HD caregiver burden, subsequently inflating societal costs.