Abstract
Background In most Huntington's disease expanded gene carriers (HDEGC), losing work capacity is the first sign of functional decline. Cognitive deterioration, motor dysfunction, and psychiatric disturbances are associated with or predict work outcomes in HD. The role of profession-specific requirements, however, has not been investigated. Objective This study examines the relationship between work outcomes, clinical characteristics, burnout, and profession-specific requirements in HDEGC. We hypothesize that burnout-like symptoms are associated with mild apathy and that profession-specific requirements influence clinical characteristics affecting work capacity in HD. Methods A cohort of 117 HDEGC (CAG repeat ≥36) participated in the “HD-work” study at Leiden University Medical Center. Participants were 18–67 years old, either, worked at baseline, or had lost their job within two years. The Unified Huntington's Disease Rating Scale assessed motor abilities, global functioning, and cognition. The HD-work questionnaire and the ‘Utrecht Burn Out Scale’ assessed work problems and burnout. Statistical methods included descriptive statistics, Pearson correlations, Cronbachs alpha, t-tests, and logistic regressions. Results Burnout-like symptoms did not differ between those with full and reduced working capacity and were not more prevalent in HD than in the general Dutch population. No significant effect was found between work outcomes and profession-specific requirements, even when adjusted for clinical characteristics. Conclusions Our study suggests that profession-specific requirements do not significantly impact work ability among individuals with HD in early phases of HD. Workplace adjustments should be tailored to individual preferences rather than profession-specific demands. Burnout-like symptoms did not affect work capacity or relate to apathy.
Published Version
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