A decision aid for additional findings in genomic sequencing: Development and pilot testing.

Autor: Freed AS; Department of Medicine, Division of Medical Genetics, University of Washington School of Medicine, Seattle, USA., Gruß I; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, USA., McMullen CK; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, USA., Leo MC; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, USA., Kauffman TL; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, USA., Porter KM; Department of Pediatrics, Division of Bioethics and Palliative Care, University of Washington School of Medicine, Seattle, USA., Muessig KR; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, USA., Eubanks D; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, USA., Goddard KAB; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, USA., Wilfond BS; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, USA; Department of Pediatrics, Division of Bioethics and Palliative Care, University of Washington School of Medicine, Seattle, USA., Liles EG; Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, USA; Northwest Permanente, Kaiser Permanente Northwest, Portland, USA. Electronic address: Elizabeth.G.Liles@kp.org.
Jazyk: angličtina
Zdroj: Patient education and counseling [Patient Educ Couns] 2021 May; Vol. 104 (5), pp. 960-968. Date of Electronic Publication: 2020 Nov 06.
DOI: 10.1016/j.pec.2020.10.038
Abstrakt: Objective: To describe the development of a web-based, patient-facing decision aid to support patients and research participants to make an informed, values-based decision about whether to receive additional results from genomic sequencing.
Methods: We developed the decision aid following the multi-step process described in the International Patient Decision Aids Standards. This utilized literature review, focus groups, and alpha testing with research participants undergoing clinical genomic sequencing.
Results: The decision aid, the Optional Results Choice Aid (ORCA), includes a seven-question "values clarification exercise," illustrative patient quotes, and summative guidance for the user. The decision aid was found to be highly readable, acceptable and relevant in alpha testing.
Conclusion: We developed a decision aid to support informed, values-based decision making for patients and research participants considering whether to receive additional results from genomic sequencing. ORCA is being implemented in the NHGRI-funded Cancer Health Assessment Reaching Many (CHARM) study, where we are measuring informed values-choice congruence.
Practice Implications: ORCA was designed to support patients and research participants to make an informed, values-based decision about whether to receive additional results from genomic sequencing.
(Copyright © 2020 The Authors. Published by Elsevier B.V. All rights reserved.)
Databáze: MEDLINE
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