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Elucidating Genetic Counseling Outcomes from the Perspective of Genetic Counselors

  • Original Research
  • Published:
Journal of Genetic Counseling

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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Acknowledgments

We would like to thank the NSGC Genetic Counseling Working Group members for their feedback throughout the process and the participants for their expertise and input.

Partial support for Deborah Cragun’s time was provided by a NCI R25 training grant awarded to Moffitt Cancer Center (R25CA147832-05). This work was also influenced by Deborah Cragun’s participation in the Mentored Training in Dissemination and Implementation Research in Cancer (MT-DIRC) program. MT-DIRC is supported through a NCI grant (R25CA171994-02) and by the Veterans Administration (VA).

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Authors and Affiliations

  1. Department of Genetics, Cell Biology, and Development, University of Minnesota-Twin Cities, 420 Delaware Street SE, MMC 485, Minneapolis, MN, 55455, USA

    Heather A. Zierhut

  2. Mass General Cancer Center, Center for Cancer Risk Assessment, Boston, MA, 02114, USA

    K. M. Shannon

  3. University of South Florida and Moffitt Cancer Center, Tampa, FL, 33612, USA

    D. L. Cragun

  4. Cancer Genetics Risk Assessment Program, St. Vincent Hospital, Indianapolis, IN, 46260, USA

    S. A. Cohen

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  1. Heather A. Zierhut
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  2. K. M. Shannon
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  3. D. L. Cragun
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  4. S. A. Cohen
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Correspondence to Heather A. Zierhut.

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Conflict of Interest

H. A. Zierhut, K. M. Shannon, D.L. Cragun and S.A. Cohen declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study. No animal studies were carried out by the authors for this article.

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Zierhut, H.A., Shannon, K.M., Cragun, D.L. et al. Elucidating Genetic Counseling Outcomes from the Perspective of Genetic Counselors. J Genet Counsel 25, 993–1001 (2016). https://doi.org/10.1007/s10897-015-9930-9

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  • DOI: https://doi.org/10.1007/s10897-015-9930-9

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