Journal of Genetic Counseling

, Volume 26, Issue 3, pp 361–378 | Cite as

A Rapid Systematic Review of Outcomes Studies in Genetic Counseling

  • Lisa Madlensky
  • Angela M. Trepanier
  • Deborah Cragun
  • Barbara Lerner
  • Kristen M. Shannon
  • Heather Zierhut
Review Paper

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.

Keywords

Genetic counseling Outcomes Review 

Notes

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.

Compliance with Ethical Standards

Conflicts of Interest

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

Human Studies and Informed Consent

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

Animal Studies

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

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Copyright information

© National Society of Genetic Counselors, Inc. 2017

Authors and Affiliations

  • Lisa Madlensky
    • 1
  • Angela M. Trepanier
    • 2
  • Deborah Cragun
    • 3
    • 4
  • Barbara Lerner
    • 5
  • Kristen M. Shannon
    • 6
  • Heather Zierhut
    • 7
  1. 1.Moores UCSD Cancer CenterUniversity of California San DiegoLa JollaUSA
  2. 2.Center for Molecular Medicine and GeneticsWayne State UniversityDetroitUSA
  3. 3.Department of Global HealthUniversity of South FloridaTampaUSA
  4. 4.Department of Cancer EpidemiologyH. Lee Moffitt Cancer Center and Research InstituteTampaUSA
  5. 5.Center for Healthcare Organization and Implementation ResearchVA Boston Healthcare SystemBostonUSA
  6. 6.Mass General Cancer CenterMass General HospitalBostonUSA
  7. 7.Department of Genetics, Cell Biology, and DevelopmentUniversity of Minnesota - Twin CitiesMinneapolisUSA

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