A decision aid for additional findings in genomic sequencing: Development and pilot testing
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-...
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ftpubmed:oai:pubmedcentral.nih.gov:8099937 2023-05-15T17:53:25+02:00 A decision aid for additional findings in genomic sequencing: Development and pilot testing Freed, Amanda S. Gruß, Inga McMullen, Carmit K. Leo, Michael C. Kauffman, Tia L. Porter, Kathryn M. Muessig, Kristin R. Eubanks, Donna Goddard, Katrina A.B. Wilfond, Benjamin S. Liles, Elizabeth G. 2020-11-06 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8099937/ http://www.ncbi.nlm.nih.gov/pubmed/33191058 https://doi.org/10.1016/j.pec.2020.10.038 en eng http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8099937/ http://www.ncbi.nlm.nih.gov/pubmed/33191058 http://dx.doi.org/10.1016/j.pec.2020.10.038 Patient Educ Couns Article Text 2020 ftpubmed https://doi.org/10.1016/j.pec.2020.10.038 2021-05-16T00:34:30Z 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. Text Orca PubMed Central (PMC) Patient Education and Counseling 104 5 960 968 |
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Article Freed, Amanda S. Gruß, Inga McMullen, Carmit K. Leo, Michael C. Kauffman, Tia L. Porter, Kathryn M. Muessig, Kristin R. Eubanks, Donna Goddard, Katrina A.B. Wilfond, Benjamin S. Liles, Elizabeth G. A decision aid for additional findings in genomic sequencing: Development and pilot testing |
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Article |
description |
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. |
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Text |
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Freed, Amanda S. Gruß, Inga McMullen, Carmit K. Leo, Michael C. Kauffman, Tia L. Porter, Kathryn M. Muessig, Kristin R. Eubanks, Donna Goddard, Katrina A.B. Wilfond, Benjamin S. Liles, Elizabeth G. |
author_facet |
Freed, Amanda S. Gruß, Inga McMullen, Carmit K. Leo, Michael C. Kauffman, Tia L. Porter, Kathryn M. Muessig, Kristin R. Eubanks, Donna Goddard, Katrina A.B. Wilfond, Benjamin S. Liles, Elizabeth G. |
author_sort |
Freed, Amanda S. |
title |
A decision aid for additional findings in genomic sequencing: Development and pilot testing |
title_short |
A decision aid for additional findings in genomic sequencing: Development and pilot testing |
title_full |
A decision aid for additional findings in genomic sequencing: Development and pilot testing |
title_fullStr |
A decision aid for additional findings in genomic sequencing: Development and pilot testing |
title_full_unstemmed |
A decision aid for additional findings in genomic sequencing: Development and pilot testing |
title_sort |
decision aid for additional findings in genomic sequencing: development and pilot testing |
publishDate |
2020 |
url |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8099937/ http://www.ncbi.nlm.nih.gov/pubmed/33191058 https://doi.org/10.1016/j.pec.2020.10.038 |
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Orca |
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Orca |
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Patient Educ Couns |
op_relation |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8099937/ http://www.ncbi.nlm.nih.gov/pubmed/33191058 http://dx.doi.org/10.1016/j.pec.2020.10.038 |
op_doi |
https://doi.org/10.1016/j.pec.2020.10.038 |
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Patient Education and Counseling |
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104 |
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5 |
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960 |
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968 |
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1766161124761272320 |