Elucidating Genetic Counseling Outcomes from the Perspective of Genetic Counselors

Journal of Genetic Counseling
Heather ZierhutStephanie Cohen

Abstract

Outcomes in the field of genetic counseling have not been well-defined or categorized, despite pressures to provide evidence-based measures in all areas of healthcare. This study describes a process to elucidate and categorize a wide-ranging set of outcomes as characterized by diverse groups of practicing genetic counselors. Semi-structured focus groups were conducted at the National Society of Genetic Counselors 2013 NSGC Annual Education Conference during an educational breakout session. A general inductive qualitative research approach was utilized to code focus group notes, categorize them into themes, and compare them across specialty groups. A total of 107 individuals participated in 14 focus groups, consisting of specialists in cancer (n = 20), general genetics (n = 40), prenatal genetics (n = 11), and "other" (n = 36). Of the twelve genetic counseling outcomes themes identified, the most common across focus groups included: 1) appropriateness of testing and accuracy of results interpretation; 2) psychosocial outcomes; 3) adherence to or receipt of appropriate medical management; and 4) patient and provider knowledge. Data assessed by specialty demonstrated similarities in outcomes themes, suggesting that a common set of...Continue Reading

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Citations

Jan 25, 2018·Journal of Genetic Counseling·Heather A ZierhutJill Davies
Oct 13, 2017·Journal of Genetic Counseling·Deborah Cragun, Heather Zierhut
Mar 18, 2020·American Journal of Medical Genetics. Part C, Seminars in Medical Genetics·Kirsten A RigganMegan A Allyse
Mar 4, 2017·Journal of Genetic Counseling·Barbara A AthensBarbara B Biesecker
Nov 1, 2018·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Maren T ScheunerCorrine I Voils
Feb 19, 2020·European Journal of Human Genetics : EJHG·Sarah GerrardJehannine Austin
Nov 13, 2020·Journal of Genetic Counseling·Krista Redlinger-GrosseHeather Zierhut

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