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. 2021 Jul 28;13(1):e12225.
doi: 10.1002/dad2.12225. eCollection 2021.

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

Bonnie Wong  1 , Diane Lucente  1   2 , Samantha Krivensky  1 , Erin Krahn  1 , Jason Karlawish  3 , Bradford C Dickerson  1
Affiliations

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

Bonnie Wong et al. Alzheimers Dement (Amst). .

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.

Keywords: affect; familial FTD (fFTD); genetic counseling; knowledge assessment.

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Conflict of interest statement

B.C.D. receives research support from NIH, Alzheimer's Drug Discovery Foundation; has consulted for Acadia, Alector, Arkuda, Axovant, Biogen, Eisai, Life Molecular Sciences, Lilly, Merck, Novartis, and Wave LifeSciences; performs editorial duties with payment for Elsevier (Neuroimage: Clinical and Cortex); and receives royalties from Oxford University Press and Cambridge University Press. J.K. receives research support from Generation Program (Novartis), A4 Study (Lily Inc.), AHEAD Study (Esai), ENGAGE, EMERGE, & ADVANCE (Biogen), and NIH; receives royalties from UpToDate; received honoraria for a talk at McGill University; and receives payment for membership on board of the Greenwall Foundation. D.L. received travel support from departmental funds and NIH grant and was paid honoraria for lecturing at the Institute of Health Professionals and the College of the Holy Cross. The other authors report no declarations of interest.

Figures

FIGURE 1
FIGURE 1
The fFTD KAPI‐Q demonstrated an improvement in participants’ knowledge about fFTD after genetic counseling (P < .01). Error bars indicate one standard error of the mean
FIGURE 2
FIGURE 2
Lower baseline knowledge of fFTD is associated with a greater gain in knowledge of fFTD after counseling (r = 0.86, P ≤ .01)
FIGURE 3
FIGURE 3
Negative affect (PANAS‐N) improves after genetic counseling (P ≤ .01). Error bars indicating one standard error of the mean
FIGURE 4
FIGURE 4
Negative affect (PANAS‐N) decreases with improvement in knowledge about fFTD after counseling (r = 0.49, P = .02)
See this image and copyright information in PMC

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