Mental health symptoms among those affected by Huntington's disease: A cross‐sectional study

BACKGROUND: Although cognitive and motor symptoms of Huntington's disease (HD) are associated with disease progression, the underlying causes of psychological symptoms are not as clearly understood. Recent evidence suggests that some mental health difficulties experienced by people with HD are shared by noncarriers within HD families. Accordingly, there is a need to evaluate potential systemic contributors to HD mental distress, to support meaningful interventions for psychological symptoms in people with HD and affected families. METHOD: We used short‐form Problem Behaviors Assessment mental health symptom data from the international Enroll‐HD data set to characterize mental health symptoms across eight HD groups: Stages 1–5, premanifest and genotype‐negative individuals, and family controls (n = 8567) using chi‐square analysis with post hoc comparisons. RESULTS: We identified that people with later‐stage HD (Stages 2–5) had significantly higher apathy, obsessive–compulsiveness, and (from Stage 3) disorientation than the remaining groups at a medium effect size, and that these findings largely held across three measure administrations over time. CONCLUSIONS: These findings highlight the critical symptoms in manifest HD from Stage 2 onward, but also demonstrate that crucial symptoms such as depression, anxiety, and irritability are present across HD‐affected groups (including noncarriers of the gene expansion). The outcomes highlight a need for specific clinical management of later‐stage HD psychological symptoms, and for systemic support across affected families.