Knowledge assessment and psychological impact of genetic counseling in people at risk for familial FTD

INTRODUCTION: The decision to undergo genetic testing for familial frontotemporal dementia (fFTD) is challenging and complex. When counseling individuals, clinicians need to know what individuals understand about the type of fFTD for which they may be at elevated risk. Unfortunately, no tools to measure understanding of fFTD exist, and no study has investigated knowledge gain from fFTD genetic counseling. METHODS: Before and after genetic counseling, 42 asymptomatic individuals from fFTD families completed the newly developed fFTD Knowledge Assessment and Psychological Impact Questionnaire (fFTD KAPI‐Q), along with affect and mood questionnaires. RESULTS: Genetic counseling resulted in substantial knowledge gain on the fFTD KAPI‐Q (average gain = 40%); those with lower pre‐counseling scores gained the most. Negative affect diminished by 11%. Individuals who gained the greatest knowledge demonstrated the greatest reduction in negative affect. CONCLUSIONS: Genetic counseling was effective regardless of level of baseline knowledge and has an immediate ameliorative impact on negative affect.