The impact of communicating uncertain test results in cancer genetic counseling: A systematic mixed studies review

Patient Educ Couns. 2020 Sep;103(9):1692-1708. doi: 10.1016/j.pec.2020.03.015. Epub 2020 Mar 19.

Abstract

Objective: Cancer genetic counseling increasingly involves discussing uncertain test results, for example because multiple genes are sequenced simultaneously. This review was performed to provide insight into how counselors' communication of uncertain test results during genetic counseling for cancer affects counselors and counselees.

Methods: A systematic mixed studies review was undertaken to review research on the effects of communicating uncertain test results. Four databases were searched using a PICO search strategy. Study findings of articles meeting the inclusion criteria were synthesized narratively.

Results: Twenty-four articles were included. Uncertain test results encompassed either an inconclusive test result or a variant of unknown significance (VUS). Counselees involved almost exclusively women at risk of hereditary breast and/or ovarian cancer. None of the articles reported effects on counselor outcomes. Counselee outcomes were categorized as cognitive, affective or behavioral. Interpretation of a VUS was overall reported as difficult, and counselees' distress and worry were repeatedly found to decrease over time after the discussion of any uncertain test result. For most other outcomes, findings were sparse and/or inconsistent.

Conclusion: Evidence on effects on counselee outcomes is scant and inconsistent. Future studies are warranted to provide insight into how counselees and counselors are affected.

Practice implications: Clinical practice could benefit from guidelines on how to address uncertain test results during pre- and posttest genetic consultations.

Keywords: Cancer genetic counseling; Communication; Counselees’ outcomes; Effects; Uncertain test results.

Publication types

  • Research Support, Non-U.S. Gov't
  • Systematic Review

MeSH terms

  • Breast Neoplasms / genetics
  • Breast Neoplasms / psychology*
  • Communication
  • Counselors / psychology*
  • Female
  • Genetic Counseling / psychology*
  • Genetic Testing
  • Humans
  • Ovarian Neoplasms / genetics
  • Ovarian Neoplasms / psychology*
  • Personal Satisfaction
  • Referral and Consultation / statistics & numerical data*
  • Uncertainty