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A Rapid Systematic Review of Outcomes Studies in Genetic Counseling

  • Review Paper
  • Published:
Journal of Genetic Counseling

Abstract

As healthcare reimbursement is increasingly tied to value-of-service, it is critical for the genetic counselor (GC) profession to demonstrate the value added by GCs through outcomes research. We conducted a rapid systematic literature review to identify outcomes of genetic counseling. Web of Science (including PubMed) and CINAHL databases were systematically searched to identify articles meeting the following criteria: 1) measures were assessed before and after genetic counseling (pre-post design) or comparisons were made between a GC group vs. a non-GC group (comparative cohort design); 2) genetic counseling outcomes could be assessed independently of genetic testing outcomes, and 3) genetic counseling was conducted by masters-level genetic counselors, or non-physician providers. Twenty-three papers met the inclusion criteria. The majority of studies were in the cancer genetic setting and the most commonly measured outcomes included knowledge, anxiety or distress, satisfaction, perceived risk, genetic testing (intentions or receipt), health behaviors, and decisional conflict. Results suggest that genetic counseling can lead to increased knowledge, perceived personal control, positive health behaviors, and improved risk perception accuracy as well as decreases in anxiety, cancer-related worry, and decisional conflict. However, further studies are needed to evaluate a wider array of outcomes in more diverse genetic counseling settings.

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Acknowledgements

Support for Deborah Cragun’s time was provided by a NCI R25T training grant awarded to Moffitt Cancer Center (5R25CA147832-04). The authors thank Eliza Jeong for assistance with formatting.

This manuscript was unfunded work completed as part of the National Society of Genetic Counselors Outcomes work group. We would like to thank NSGC leadership for helping to formulate the working group’s study inclusion criteria for this review and for providing comments on an earlier draft of this manuscript.

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Authors and Affiliations

  1. Moores UCSD Cancer Center, University of California San Diego, 3855 Health Sciences Drive, La Jolla, CA, 92091-0901, USA

    Lisa Madlensky

  2. Center for Molecular Medicine and Genetics, Wayne State University, Detroit, MI, USA

    Angela M. Trepanier

  3. Department of Global Health, University of South Florida, Tampa, FL, USA

    Deborah Cragun

  4. Department of Cancer Epidemiology, H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL, USA

    Deborah Cragun

  5. Center for Healthcare Organization and Implementation Research, VA Boston Healthcare System, Boston, MA, USA

    Barbara Lerner

  6. Mass General Cancer Center, Mass General Hospital, Boston, MA, USA

    Kristen M. Shannon

  7. Department of Genetics, Cell Biology, and Development, University of Minnesota - Twin Cities, Minneapolis, MN, USA

    Heather Zierhut

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  1. Lisa Madlensky
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  2. Angela M. Trepanier
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  3. Deborah Cragun
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  4. Barbara Lerner
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Correspondence to Lisa Madlensky.

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Lisa Madlensky, Angela M. Trepanier, Deborah Cragun, Barbara Lerner, Kristen M. Shannon and Heather Zierhut declare that they have no conflict of interest.

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Madlensky, L., Trepanier, A.M., Cragun, D. et al. A Rapid Systematic Review of Outcomes Studies in Genetic Counseling. J Genet Counsel 26, 361–378 (2017). https://doi.org/10.1007/s10897-017-0067-x

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  • DOI: https://doi.org/10.1007/s10897-017-0067-x

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