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

Authors :
Freed AS
Gruß I
McMullen CK
Leo MC
Kauffman TL
Porter KM
Muessig KR
Eubanks D
Goddard KAB
Wilfond BS
Liles EG
Source :
Patient education and counseling [Patient Educ Couns] 2021 May; Vol. 104 (5), pp. 960-968. Date of Electronic Publication: 2020 Nov 06.
Publication Year :
2021

Abstract

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.<br />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.<br />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.<br />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.<br />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.<br /> (Copyright © 2020 The Authors. Published by Elsevier B.V. All rights reserved.)

Details

Language :
English
ISSN :
1873-5134
Volume :
104
Issue :
5
Database :
MEDLINE
Journal :
Patient education and counseling
Publication Type :
Academic Journal
Accession number :
33191058
Full Text :
https://doi.org/10.1016/j.pec.2020.10.038