Open AccessKnowledge assessment and psychological impact of genetic counseling in people at risk for familial FTD
Author(s) -
Wong Bonnie,
Lucente Diane,
Krivensky Samantha,
Krahn Erin,
Karlawish Jason,
Dickerson Bradford C.
Publication year - 2021
Publication title -
alzheimer's and dementia: diagnosis, assessment and disease monitoring
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.497
H-Index - 37
ISSN - 2352-8729
DOI - 10.1002/dad2.12225
Subject(s) - affect (linguistics) , genetic counseling , genetic testing , clinical psychology , mood , psychology , medicine , psychiatry , genetics , biology , communication
Abstract 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.