Risk communication in genetic counseling: Exploring uptake and perception of recurrence numbers, and their impact on patient outcomes

Clinical Genetics
K BorleJ Austin

Abstract

Providing recurrence numbers is often considered a fundamental component of genetic counseling. We sought to fill knowledge gaps regarding how often patients actively seek recurrence numbers, and how they impact patient outcomes. We conducted a retrospective chart review at a clinic where patients routinely complete the Genetic Counseling Outcomes Scale (GCOS, measuring empowerment) pre (T1)/post (T2) appointment. Using analysis of covariance, we evaluated the effect on T2 GCOS score of: (1) receiving recurrence numbers and (2) patient perception of recurrence numbers. Recurrence numbers were a primary indication for 134/300 patients (45%). After counseling about etiology and risk-reducing strategies, 116 patients (39%) opted to receive recurrence numbers, with most (n = 64, 55%) perceiving the number to be lower than expected. There was no difference in T2 GCOS scores between those who: (1) received recurrence numbers vs those who did not, or (2) perceived the number to be lower than expected vs those with other perceptions. However, a subset of patients who did not receive recurrence numbers had larger increases in GCOS scores. Our data provide impetus to question the assumption that recurrence numbers should be routinely pro...Continue Reading

References

Aug 1, 1974·American Journal of Diseases of Children·M Feingold
Jun 9, 2006·Journal of Genetic Counseling·UNKNOWN National Society of Genetic Counselors' Definition Task ForceJanet L Williams
Dec 12, 2007·Journal of Genetic Counseling·Jehannine C AustinHolly L Peay
Jan 17, 2008·European Journal of Human Genetics : EJHG·Elina RantanenHelena Kääriäinen
Aug 25, 2009·Hereditary Cancer in Clinical Practice·Johanna RantalaYvonne Brandberg
Sep 25, 2009·The Breast Journal·Amy MackenzieAngela R Bradbury
Oct 7, 2010·European Journal of Human Genetics : EJHG·Marion McAllisterChris Todd
Feb 15, 2013·Journal of Health Psychology·Antonella Zaccaro, Maria Francesca Freda
Mar 5, 2016·Applied & Translational Genomics·Jane RyanJehannine C Austin
Jul 29, 2016·Prenatal Diagnosis·Angela InglisJehannine Austin
Feb 9, 2017·Journal of Genetic Counseling·Lisa MadlenskyHeather Zierhut

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Citations

Mar 22, 2019·Journal of Genetic Counseling·Emily MorrisJehannine Austin
Jun 30, 2019·Molecular Genetics & Genomic Medicine·Lourdes MartorellElisabet Vilella
Sep 11, 2019·Cold Spring Harbor Perspectives in Medicine·Jehannine C Austin
Feb 19, 2020·European Journal of Human Genetics : EJHG·Sarah GerrardJehannine Austin
Oct 2, 2019·Cold Spring Harbor Perspectives in Medicine·Holly Landrum Peay
May 11, 2021·European Journal of Paediatric Neurology : EJPN : Official Journal of the European Paediatric Neurology Society·Danique R M VlaskampConny M A van Ravenswaaij-Arts

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