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Defining Our Clinical Practice: The Identification of Genetic Counseling Outcomes Utilizing the Reciprocal Engagement Model

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Journal of Genetic Counseling

Abstract

The need for evidence-based medicine, including comparative effectiveness studies and patient-centered outcomes research, has become a major healthcare focus. To date, a comprehensive list of genetic counseling outcomes, as espoused by genetic counselors, has not been established and thus, identification of outcomes unique to genetic counseling services has become a priority for the National Society of Genetic Counselors (NSGC). The purpose of this study was to take a critical first step at identifying a more comprehensive list of genetic counseling outcomes. This paper describes the results of a focus group study using the Reciprocal-Engagement Model (REM) as a framework to characterize patient-centered outcomes of genetic counseling clinical practice. Five focus groups were conducted with 27 peer nominated participants who were clinical genetic counselors, genetic counseling program directors, and/or outcomes researchers in genetic counseling. Members of each focus group were asked to identify genetic counseling outcomes for four to five of the 17 goals of the REM. A theory-driven, thematic analysis of focus group data yielded 194 genetic counseling outcomes across the 17 goals. Participants noted some concerns about how genetic counseling outcomes will be measured and evaluated given varying stakeholders and the long-term nature of genetic concerns. The present results provide a list of outcomes for use in future genetic counseling outcomes research and for empirically-supported clinical interventions.

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Notes

  1. Throughout this paper, genetic counseling outcomes refer to outcomes espoused by genetic counselors providing genetic counseling, in other words, genetic counselor-defined outcomes.

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Acknowledgments

Thank you to the focus group participants for their time and valuable contribution to this study. We would also like to acknowledge the focus group moderators and note-takers for their assistance in conducting the focus groups.

The authors would like to acknowledge the NSGC GC Outcomes Working Group - Barbara Lerner, Lisa Madlensky, Angela Trepanier, Kristen Shannon, and Debi Cragun – for their ideas and support that contributed to this study. This study was funded by the National Society of Genetic Counselors (NSGC) Audrey Heimler Special Topics Grant.

Dr. Christina Palmer served as Action Editor throughout the review process.

Conflict of Interest

K. Redlinger-Grosse, P. McCarthy Veach, S. Cohen, B. S. LeRoy, I. M. MacFarlane, and H. Zierhut declare 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.

Informed consent was obtained from all individual participants included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

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Authors and Affiliations

  1. Department of Educational Psychology, University of Minnesota, 250 Education Sciences Building, 56 E. River Road, Minneapolis, MN, 55455, USA

    Krista Redlinger-Grosse & Patricia McCarthy Veach

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

    Stephanie Cohen

  3. Department of Genetics, Cell Biology, and Development, Institute of Human Genetics, University of Minnesota, Minneapolis, MN, USA

    Bonnie S. LeRoy & Heather Zierhut

  4. Department of Psychology, Austin College, Sherman, TX, USA

    Ian M. MacFarlane

Authors
  1. Krista Redlinger-Grosse
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  2. Patricia McCarthy Veach
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  3. Stephanie Cohen
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  4. Bonnie S. LeRoy
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  5. Ian M. MacFarlane
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  6. Heather Zierhut
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Correspondence to Krista Redlinger-Grosse.

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Redlinger-Grosse, K., Veach, P.M., Cohen, S. et al. Defining Our Clinical Practice: The Identification of Genetic Counseling Outcomes Utilizing the Reciprocal Engagement Model. J Genet Counsel 25, 239–257 (2016). https://doi.org/10.1007/s10897-015-9864-2

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