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Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision Health

Information on patients’ preferences is essential to guide the development of more efficient genomic counseling service delivery models. We examined patient preferences in the context of use of a post-test genomic counseling framework on patients (n = 44) with chronic disease receiving online test r...

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Autores principales: Sturm, Amy C., Schmidlen, Tara, Scheinfeldt, Laura, Hovick, Shelly, McElroy, Joseph P., Toland, Amanda E., Roberts, J. Scott, Sweet, Kevin
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6164140/
https://www.ncbi.nlm.nih.gov/pubmed/30046027
http://dx.doi.org/10.3390/jpm8030025
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author Sturm, Amy C.
Schmidlen, Tara
Scheinfeldt, Laura
Hovick, Shelly
McElroy, Joseph P.
Toland, Amanda E.
Roberts, J. Scott
Sweet, Kevin
author_facet Sturm, Amy C.
Schmidlen, Tara
Scheinfeldt, Laura
Hovick, Shelly
McElroy, Joseph P.
Toland, Amanda E.
Roberts, J. Scott
Sweet, Kevin
author_sort Sturm, Amy C.
collection PubMed
description Information on patients’ preferences is essential to guide the development of more efficient genomic counseling service delivery models. We examined patient preferences in the context of use of a post-test genomic counseling framework on patients (n = 44) with chronic disease receiving online test reports for eight different diseases and one drug-response result. We also explored patients’ disease risk awareness, recall of test report information, and confidence in knowing what to do with their test results. Prior to the post-test genomic counseling session, all participants viewed at least one test report; 81.6% of available test reports were reviewed in total. Participants requested more phone (36) than in-person counseling sessions (8), and phone sessions were shorter (mean 29.1 min; range 12–75 min) than in-person sessions (mean 52.8 min; range 23–85 min). A total of 182 test reports were discussed over the course of 44 counseling sessions (mean 4.13, range 1–9). Thirty-six (81.8%) participants requested assessment for additional medical/family history concerns. In exploring patient experiences of disease risk awareness and recall, no significant differences were identified in comparison to those of participants (n = 199) that had received in-person post-test genomic counseling in a parent study randomized controlled trial (RCT). In summary, a novel post-test genomic counseling framework allowed for a tailored approach to counseling based on the participants’ predetermined choices.
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spelling pubmed-61641402018-10-15 Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision Health Sturm, Amy C. Schmidlen, Tara Scheinfeldt, Laura Hovick, Shelly McElroy, Joseph P. Toland, Amanda E. Roberts, J. Scott Sweet, Kevin J Pers Med Article Information on patients’ preferences is essential to guide the development of more efficient genomic counseling service delivery models. We examined patient preferences in the context of use of a post-test genomic counseling framework on patients (n = 44) with chronic disease receiving online test reports for eight different diseases and one drug-response result. We also explored patients’ disease risk awareness, recall of test report information, and confidence in knowing what to do with their test results. Prior to the post-test genomic counseling session, all participants viewed at least one test report; 81.6% of available test reports were reviewed in total. Participants requested more phone (36) than in-person counseling sessions (8), and phone sessions were shorter (mean 29.1 min; range 12–75 min) than in-person sessions (mean 52.8 min; range 23–85 min). A total of 182 test reports were discussed over the course of 44 counseling sessions (mean 4.13, range 1–9). Thirty-six (81.8%) participants requested assessment for additional medical/family history concerns. In exploring patient experiences of disease risk awareness and recall, no significant differences were identified in comparison to those of participants (n = 199) that had received in-person post-test genomic counseling in a parent study randomized controlled trial (RCT). In summary, a novel post-test genomic counseling framework allowed for a tailored approach to counseling based on the participants’ predetermined choices. MDPI 2018-07-25 /pmc/articles/PMC6164140/ /pubmed/30046027 http://dx.doi.org/10.3390/jpm8030025 Text en © 2018 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Sturm, Amy C.
Schmidlen, Tara
Scheinfeldt, Laura
Hovick, Shelly
McElroy, Joseph P.
Toland, Amanda E.
Roberts, J. Scott
Sweet, Kevin
Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision Health
title Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision Health
title_full Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision Health
title_fullStr Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision Health
title_full_unstemmed Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision Health
title_short Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision Health
title_sort early outcome data assessing utility of a post-test genomic counseling framework for the scalable delivery of precision health
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6164140/
https://www.ncbi.nlm.nih.gov/pubmed/30046027
http://dx.doi.org/10.3390/jpm8030025
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