Literature DB >> 31886693

Values clarification and parental decision making about newborn genomic sequencing.

Susana Peinado1, Ryan S Paquin1, Christine Rini2, Myra Roche3, Rita M Butterfield3, Jonathan S Berg3, Cynthia M Powell3, Donald B Bailey4, Megan A Lewis1.   

Abstract

OBJECTIVE: Using an online decision aid developed to support parental decision making about newborn genomic sequencing, we tested whether adding a values clarification exercise to educational content would improve decision making outcomes and influence intention to pursue genomic sequencing. We also examined whether the effect of values clarification varied depending on one's health literacy level.
METHOD: In an online experiment, women and men aged 18 to 44 who were either pregnant or had a pregnant partner, were currently trying to get pregnant, or were preparing for a pregnancy within the next 2 years were randomly assigned to complete either a decision aid with educational information about newborn genomic sequencing or a decision aid with the same educational information and a values clarification exercise.
RESULTS: Of the 1,000 participants who completed the decision aid, those who completed the values clarification exercise reported less decision regret, F(1, 995) = 6.19, p = .01, and were clearer about their personal values, F(1, 995) = 6.39, p = .01. Moderation analyses revealed that the benefit of values clarification on decisional conflict was particularly evident among participants with lower health literacy, B = -3.94, SE = 1.67, t = -2.36, p = .018. There was not a significant moderation effect of health literacy and decision aid condition on decision regret.
CONCLUSIONS: Adding a values clarification exercise to decision aids for parents making decisions about genomic sequencing may improve the decision-making experience and provide some benefit to individuals with lower health literacy. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

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Year:  2019        PMID: 31886693      PMCID: PMC7078054          DOI: 10.1037/hea0000829

Source DB:  PubMed          Journal:  Health Psychol        ISSN: 0278-6133            Impact factor:   4.267


  27 in total

Review 1.  Design Features of Explicit Values Clarification Methods: A Systematic Review.

Authors:  Holly O Witteman; Laura D Scherer; Teresa Gavaruzzi; Arwen H Pieterse; Andrea Fuhrel-Forbis; Selma Chipenda Dansokho; Nicole Exe; Valerie C Kahn; Deb Feldman-Stewart; Nananda F Col; Alexis F Turgeon; Angela Fagerlin
Journal:  Med Decis Making       Date:  2016-01-29       Impact factor: 2.583

2.  Deliberation before determination: the definition and evaluation of good decision making.

Authors:  Glyn Elwyn; Talya Miron-Shatz
Journal:  Health Expect       Date:  2009-09-09       Impact factor: 3.377

3.  Newborn Sequencing in Genomic Medicine and Public Health.

Authors:  Jonathan S Berg; Pankaj B Agrawal; Donald B Bailey; Alan H Beggs; Steven E Brenner; Amy M Brower; Julie A Cakici; Ozge Ceyhan-Birsoy; Kee Chan; Flavia Chen; Robert J Currier; Dmitry Dukhovny; Robert C Green; Julie Harris-Wai; Ingrid A Holm; Brenda Iglesias; Galen Joseph; Stephen F Kingsmore; Barbara A Koenig; Pui-Yan Kwok; John Lantos; Steven J Leeder; Megan A Lewis; Amy L McGuire; Laura V Milko; Sean D Mooney; Richard B Parad; Stacey Pereira; Joshua Petrikin; Bradford C Powell; Cynthia M Powell; Jennifer M Puck; Heidi L Rehm; Neil Risch; Myra Roche; Joseph T Shieh; Narayanan Veeraraghavan; Michael S Watson; Laurel Willig; Timothy W Yu; Tiina Urv; Anastasia L Wise
Journal:  Pediatrics       Date:  2017-01-17       Impact factor: 7.124

4.  Effect of adding a values clarification exercise to a decision aid on heart disease prevention: a randomized trial.

Authors:  Stacey L Sheridan; Jennifer M Griffith; Lindy Behrend; Ziya Gizlice; Michael P Pignone
Journal:  Med Decis Making       Date:  2010-05-18       Impact factor: 2.583

Review 5.  Decision field theory: a dynamic-cognitive approach to decision making in an uncertain environment.

Authors:  J R Busemeyer; J T Townsend
Journal:  Psychol Rev       Date:  1993-07       Impact factor: 8.934

6.  Validation of a decisional conflict scale.

Authors:  A M O'Connor
Journal:  Med Decis Making       Date:  1995 Jan-Mar       Impact factor: 2.583

7.  Supporting Parental Decisions About Genomic Sequencing for Newborn Screening: The NC NEXUS Decision Aid.

Authors:  Megan A Lewis; Ryan S Paquin; Myra I Roche; Robert D Furberg; Christine Rini; Jonathan S Berg; Cynthia M Powell; Donald B Bailey
Journal:  Pediatrics       Date:  2016-01       Impact factor: 7.124

8.  Developing a quality criteria framework for patient decision aids: online international Delphi consensus process.

Authors:  Glyn Elwyn; Annette O'Connor; Dawn Stacey; Robert Volk; Adrian Edwards; Angela Coulter; Richard Thomson; Alexandra Barratt; Michael Barry; Steven Bernstein; Phyllis Butow; Aileen Clarke; Vikki Entwistle; Deb Feldman-Stewart; Margaret Holmes-Rovner; Hilary Llewellyn-Thomas; Nora Moumjid; Al Mulley; Cornelia Ruland; Karen Sepucha; Alan Sykes; Tim Whelan
Journal:  BMJ       Date:  2006-08-14

9.  The Single Item Literacy Screener: evaluation of a brief instrument to identify limited reading ability.

Authors:  Nancy S Morris; Charles D MacLean; Lisa D Chew; Benjamin Littenberg
Journal:  BMC Fam Pract       Date:  2006-03-24       Impact factor: 2.497

10.  A behavior-theoretic evaluation of values clarification on parental beliefs and intentions toward genomic sequencing for newborns.

Authors:  Ryan S Paquin; Susana Peinado; Megan A Lewis; Barbara B Biesecker; Christine Rini; Myra Roche; Rita M Butterfield; Cynthia M Powell; Jonathan S Berg; Donald B Bailey
Journal:  Soc Sci Med       Date:  2018-11-09       Impact factor: 4.634

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  5 in total

1.  Decisional Satisfaction, Regret, and Conflict Among Parents of Infants with Neurologic Conditions.

Authors:  Margaret H Barlet; Peter A Ubel; Kevin P Weinfurt; Hannah C Glass; Kathryn I Pollak; Debra H Brandon; Monica E Lemmon
Journal:  J Pediatr       Date:  2022-02-26       Impact factor: 6.314

2.  Decision Making for Infants With Neurologic Conditions.

Authors:  Charlotte Gerrity; Samantha Farley; Mary C Barks; Peter A Ubel; Debra Brandon; Kathryn I Pollak; Monica E Lemmon
Journal:  J Child Neurol       Date:  2022-02-08       Impact factor: 2.363

3.  Actionability of commercial laboratory sequencing panels for newborn screening and the importance of transparency for parental decision-making.

Authors:  Daniela M DeCristo; Laura V Milko; Julianne M O'Daniel; Ann Katherine M Foreman; Lonna F Mollison; Bradford C Powell; Cynthia M Powell; Jonathan S Berg
Journal:  Genome Med       Date:  2021-03-29       Impact factor: 11.117

4.  Clarifying Values: An Updated and Expanded Systematic Review and Meta-Analysis.

Authors:  Holly O Witteman; Ruth Ndjaboue; Gratianne Vaisson; Selma Chipenda Dansokho; Bob Arnold; John F P Bridges; Sandrine Comeau; Angela Fagerlin; Teresa Gavaruzzi; Melina Marcoux; Arwen Pieterse; Michael Pignone; Thierry Provencher; Charles Racine; Dean Regier; Charlotte Rochefort-Brihay; Praveen Thokala; Marieke Weernink; Douglas B White; Celia E Wills; Jesse Jansen
Journal:  Med Decis Making       Date:  2021-10       Impact factor: 2.583

5.  Parental Guidance Suggested: Engaging Parents as Partners in Research Studies of Genomic Screening for a Pediatric Population.

Authors:  Sabrina N Powell; Grace Byfield; Ashley Bennetone; Annabelle M Frantz; Langston K Harrison; Erin R James-Crook; Heather Osborne; Thomas H Owens; Jonathan L Shaw; Julianne O'Daniel; Laura V Milko
Journal:  Front Genet       Date:  2022-03-25       Impact factor: 4.772

  5 in total

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