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01-10-2016 | Original Research

Elucidating Genetic Counseling Outcomes from the Perspective of Genetic Counselors

Authors: Heather A. Zierhut, K. M. Shannon, D. L. Cragun, S. A. Cohen

Published in: Journal of Genetic Counseling | Issue 5/2016

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 genetic counseling outcomes would likely be appropriate to cover the majority of needs for the profession. Results can serve as a platform from which to build a more well-defined and comprehensive set of outcomes.

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Title: Elucidating Genetic Counseling Outcomes from the Perspective of Genetic Counselors
Authors: Heather A. Zierhut
K. M. Shannon
D. L. Cragun
S. A. Cohen
Publication date: 01-10-2016
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 5/2016
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-015-9930-9

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