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 onl...

Full description

Bibliographic Details
Main Authors: Amy C. Sturm, Tara Schmidlen, Laura Scheinfeldt, Shelly Hovick, Joseph P. McElroy, Amanda E. Toland, J. Scott Roberts, Kevin Sweet
Format: Article
Language:English
Published: MDPI AG 2018-07-01
Series:Journal of Personalized Medicine
Subjects:
Online Access:http://www.mdpi.com/2075-4426/8/3/25
_version_ 1797759926349594624
author Amy C. Sturm
Tara Schmidlen
Laura Scheinfeldt
Shelly Hovick
Joseph P. McElroy
Amanda E. Toland
J. Scott Roberts
Kevin Sweet
author_facet Amy C. Sturm
Tara Schmidlen
Laura Scheinfeldt
Shelly Hovick
Joseph P. McElroy
Amanda E. Toland
J. Scott Roberts
Kevin Sweet
author_sort Amy C. Sturm
collection DOAJ
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.
first_indexed 2024-03-12T18:51:29Z
format Article
id doaj.art-4e6056ef8a64483b871c4a459280e503
institution Directory Open Access Journal
issn 2075-4426
language English
last_indexed 2024-03-12T18:51:29Z
publishDate 2018-07-01
publisher MDPI AG
record_format Article
series Journal of Personalized Medicine
spelling doaj.art-4e6056ef8a64483b871c4a459280e5032023-08-02T07:12:45ZengMDPI AGJournal of Personalized Medicine2075-44262018-07-01832510.3390/jpm8030025jpm8030025Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision HealthAmy C. Sturm0Tara Schmidlen1Laura Scheinfeldt2Shelly Hovick3Joseph P. McElroy4Amanda E. Toland5J. Scott Roberts6Kevin Sweet7Division of Human Genetics, Ohio State University Wexner Medical Center, Columbus, OH 43221, USAGenomic Medicine Institute, Geisinger, Danville, PA 17821, USACoriell Institute for Medical Research, 403 Haddon Avenue, Camden, NJ 08103, USASchool of Communication, Ohio State University, Columbus, OH 43214, USADepartment of Biomedical Informatics, Center for Biostatistics, The Ohio State University, Columbus, OH 43221, USADivision of Human Genetics, Ohio State University Wexner Medical Center, Columbus, OH 43221, USADepartment of Health Behavior & Health Education, University of Michigan School of Public Health, Ann Arbor, MI 48109, USADivision of Human Genetics, Ohio State University Wexner Medical Center, Columbus, OH 43221, USAInformation 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.http://www.mdpi.com/2075-4426/8/3/25geneticgenomiccounselingservice deliveryrisk awarenessrecalltelegenetictelephonein-person
spellingShingle Amy C. Sturm
Tara Schmidlen
Laura Scheinfeldt
Shelly Hovick
Joseph P. McElroy
Amanda E. Toland
J. Scott Roberts
Kevin Sweet
Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision Health
Journal of Personalized Medicine
genetic
genomic
counseling
service delivery
risk awareness
recall
telegenetic
telephone
in-person
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 genetic
genomic
counseling
service delivery
risk awareness
recall
telegenetic
telephone
in-person
url http://www.mdpi.com/2075-4426/8/3/25
work_keys_str_mv AT amycsturm earlyoutcomedataassessingutilityofaposttestgenomiccounselingframeworkforthescalabledeliveryofprecisionhealth
AT taraschmidlen earlyoutcomedataassessingutilityofaposttestgenomiccounselingframeworkforthescalabledeliveryofprecisionhealth
AT laurascheinfeldt earlyoutcomedataassessingutilityofaposttestgenomiccounselingframeworkforthescalabledeliveryofprecisionhealth
AT shellyhovick earlyoutcomedataassessingutilityofaposttestgenomiccounselingframeworkforthescalabledeliveryofprecisionhealth
AT josephpmcelroy earlyoutcomedataassessingutilityofaposttestgenomiccounselingframeworkforthescalabledeliveryofprecisionhealth
AT amandaetoland earlyoutcomedataassessingutilityofaposttestgenomiccounselingframeworkforthescalabledeliveryofprecisionhealth
AT jscottroberts earlyoutcomedataassessingutilityofaposttestgenomiccounselingframeworkforthescalabledeliveryofprecisionhealth
AT kevinsweet earlyoutcomedataassessingutilityofaposttestgenomiccounselingframeworkforthescalabledeliveryofprecisionhealth