How patients deal with an ambiguous medical test: Decision-making after genetic testing

Courtney L. Scherr*, Sanjana Ramesh, Hannah Getachew-Smith, Kerstin Kalke, Kyra Ramsey, Baruch Fischhoff, Susan T. Vadaparampil

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

2 Scopus citations

Abstract

Objective: We know little about how patients make decisions when they receive a variant of uncertain significance result (VUS) from genetic testing. The purpose of this study was to elucidate a model of patient-informed decision-making after receiving a VUS result. Methods: Using an adapted Mental Models Approach, we conducted semi-structured interviews with women who received a VUS result from genetic testing for hereditary breast cancer (N = 20) to explore factors they believed were relevant to their decision-making. Two coders used a coding scheme informed by experts in hereditary breast cancer to conduct analysis. Inter-coder reliability was α = .86. Results: Three overarching decision themes emerged from the interviews: managing ambiguity, medical risk management, and sharing results with others. While participants noted some difficulty understanding their result, genetic counselors’ interpretations, psychosocial factors (e.g., risk perceptions), and competing extrinsic demands influenced their decisions. Conclusion: Complex influences affect patient decision-making after a VUS result from genetic testing and may encourage health protective behavior. Practice Implications: Even patients who understand their test result could use support managing the ambiguity of their test result and sharing it with others.

Original languageEnglish (US)
Pages (from-to)953-959
Number of pages7
JournalPatient education and counseling
Volume104
Issue number5
DOIs
StatePublished - May 2021

Keywords

  • Decision-making
  • Genetics
  • Hereditary breast cancer
  • Mental models
  • Patient-provider communication
  • Variant of uncertain significance

ASJC Scopus subject areas

  • Medicine(all)

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