TY - JOUR
T1 - How patients deal with an ambiguous medical test
T2 - Decision-making after genetic testing
AU - Scherr, Courtney L.
AU - Ramesh, Sanjana
AU - Getachew-Smith, Hannah
AU - Kalke, Kerstin
AU - Ramsey, Kyra
AU - Fischhoff, Baruch
AU - Vadaparampil, Susan T.
N1 - Funding Information:
This work was supported by the National Institutes of Health [ R03 CA194643-02 ]. The content is solely the responsibility of the authors, and does not necessarily represent the official views of the National Institutes of Health.
Publisher Copyright:
© 2020
PY - 2021/5
Y1 - 2021/5
N2 - 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.
AB - 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.
KW - Decision-making
KW - Genetics
KW - Hereditary breast cancer
KW - Mental models
KW - Patient-provider communication
KW - Variant of uncertain significance
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U2 - 10.1016/j.pec.2020.10.020
DO - 10.1016/j.pec.2020.10.020
M3 - Article
C2 - 33214013
AN - SCOPUS:85096190188
VL - 104
SP - 953
EP - 959
JO - Patient Education and Counseling
JF - Patient Education and Counseling
SN - 0738-3991
IS - 5
ER -
