The psychological experience of living at risk of an autosomal dominant neurological condition: A scoping review

As our understanding of genetic risk and the availability of genetic testing increases, consideration of the psychological impact of living at risk for an autosomal dominant neurological condition (ADNC) becomes more pertinent. A systematic search of PsycINFO, MEDLINE, and Web of Science was run to identify studies exploring the psychological experience of adults at risk for ADNCs following Joanna Briggs Institute and Preferred Reporting Items for Systematic Reviews and Meta‐Analyses extension for scoping reviews (PRISMA‐ScR) guidelines. Twenty‐four studies, published between 1990 and 2024, met inclusion criteria. While qualitative studies report fluctuating distress, heightened uncertainty, and challenges to identity shaped by personal and systemic factors, quantitative studies have largely shown minimal psychological burden using standardized measures. Intervention studies have shown preliminary support for group‐based and mindfulness‐informed approaches. Our review highlights the fluctuating nature of psychological distress and future research should prioritize longitudinal approaches and tailored interventions to meet the unique psychological needs of those living at risk.