Disentangling suicidal ideation from behaviour in Huntington's disease: A Scoping review of definitions, risk factors, and research gaps.

BACKGROUND

Huntington's disease is a hereditary neurodegenerative disorder characterised by a triad of symptoms including motor dysfunction, cognitive impairments, and psychiatric symptoms. Suicidal ideation (SI)-thoughts, considerations, or preoccupations about ending one's life-is a significant concern. Although previous reviews acknowledge the importance of distinguishing between SI and suicidal behaviour, none comprehensively explored how SI has been defined, measured, and understood across disease stages. Due to the lack of clarity in the conceptualisation of SI as a distinct construct, this review disaggregated SI from behaviour to provide a stage-specific synthesis of SI in Huntington's disease to address conceptual, methodological, and clinical gaps.

METHODS

Studies on SI in Huntington's were identified through systematic searches in the PubMed and Science Direct databases.

RESULTS

Twelve studies met the inclusion criteria. SI in individuals with Huntington's was significantly higher compared to the general population, particularly in the pre-manifest and early disease stages. Risk factors included depression, hopelessness, anxiety, aggression, and irritability. Although ideation appeared to decrease later in the disease course, it was not entirely clear whether it truly demonstrated an absence of distress or a loss of capacity to communicate it. No studies examined clinical interventions or caregiver roles.

CONCLUSIONS

SI is significantly prevalent in individuals with Huntington's; however, it remains unclear exactly when, where, and how suicidal thoughts emerge across the disease trajectory. Research gaps include inconsistent assessment methods, lack of longitudinal studies, and intervention strategies. Future research ought to prioritise the development of standardised suicide risk assessment methods tailored to Huntington's-specific symptoms and disease progression, as well as integrating caregiver perspectives into risk assessments and intervention planning.