Literature DB >> 29526281

Outcomes of Counseling after Education about Carrier Results: A Randomized Controlled Trial.

Katie L Lewis1, Kendall L Umstead2, Jennifer J Johnston3, Ilana M Miller3, Lydia J Thompson2, Kristen P Fishler3, Leslie G Biesecker3, Barbara B Biesecker4.   

Abstract

In-person education and counseling for all people receiving genetic results is the predominant model of disclosure but is challenged by the growing volume of low-impact results generated by sequencing. Evidence suggests that web-based tools may be as effective as in-person counseling at educating individuals about their low-impact results. However, the effects of counseling have not been assessed. To evaluate its utility, carrier results were returned to 459 post-reproductive participants from the ClinSeq cohort within a randomized controlled trial. Participants received education and were randomized to receive counseling or not. Primary outcomes included risk worry, test-related positive experiences, attitudes, and decisional conflict. Secondary outcomes were satisfaction, preferences, and counseling value. There were no differences between participants who received counseling and those who did not in the primary outcomes. Participants who received counseling were more satisfied than those who did not (x¯ = 10.2 and 9.5, respectively, p < 0.002, range: 3-12), although overall satisfaction was high. Most participants (92%) randomized to counseling preferred it and valued it because it provided validation of their reactions and an opportunity for interpersonal interaction. Web-based tools address the challenge of returning low-impact results, and these data provide empiric evidence that counseling, although preferred and satisfying, is not critical to achieving desired outcomes. Published by Elsevier Inc.

Entities:  

Keywords:  genetic carrier screening; genetic counseling; outcomes research; randomized controlled trial; whole-exome sequencing

Mesh:

Year:  2018        PMID: 29526281      PMCID: PMC5985358          DOI: 10.1016/j.ajhg.2018.02.009

Source DB:  PubMed          Journal:  Am J Hum Genet        ISSN: 0002-9297            Impact factor:   11.025


  23 in total

1.  Psychological impact of population-based carrier testing for cystic fibrosis: 3-year follow-up. UK Cystic Fibrosis Follow-Up Study Group.

Authors:  D Axworthy; D J Brock; M Bobrow; T M Marteau
Journal:  Lancet       Date:  1996-05-25       Impact factor: 79.321

Review 2.  A Rapid Systematic Review of Outcomes Studies in Genetic Counseling.

Authors:  Lisa Madlensky; Angela M Trepanier; Deborah Cragun; Barbara Lerner; Kristen M Shannon; Heather Zierhut
Journal:  J Genet Couns       Date:  2017-02-06       Impact factor: 2.537

Review 3.  Diagnostic clinical genome and exome sequencing.

Authors:  Leslie G Biesecker; Robert C Green
Journal:  N Engl J Med       Date:  2014-06-19       Impact factor: 91.245

4.  Group genetic counseling: An alternate service delivery model in a high risk prenatal screening population.

Authors:  Mireille Cloutier; Lauren Gallagher; Claire Goldsmith; Salwa Akiki; Nick Barrowman; Shawna Morrison
Journal:  Prenat Diagn       Date:  2017-10-17       Impact factor: 3.050

5.  Intentions to receive individual results from whole-genome sequencing among participants in the ClinSeq study.

Authors:  Flavia M Facio; Haley Eidem; Tyler Fisher; Stephanie Brooks; Amy Linn; Kimberly A Kaphingst; Leslie G Biesecker; Barbara B Biesecker
Journal:  Eur J Hum Genet       Date:  2012-08-15       Impact factor: 4.246

Review 6.  A Systematic Review of Randomized Controlled Trials to Assess Outcomes of Genetic Counseling.

Authors:  Barbara A Athens; Samantha L Caldwell; Kendall L Umstead; Philip D Connors; Ethan Brenna; Barbara B Biesecker
Journal:  J Genet Couns       Date:  2017-03-02       Impact factor: 2.537

7.  Randomized trial of a decision aid for BRCA1/BRCA2 mutation carriers: impact on measures of decision making and satisfaction.

Authors:  Marc D Schwartz; Heiddis B Valdimarsdottir; Tiffani A DeMarco; Beth N Peshkin; William Lawrence; Jessica Rispoli; Karen Brown; Claudine Isaacs; Suzanne O'Neill; Rebecca Shelby; Sherry C Grumet; Margaret M McGovern; Sarah Garnett; Heather Bremer; Suzanne Leaman; Kathryn O'Mara; Sarah Kelleher; Kathryn Komaridis
Journal:  Health Psychol       Date:  2009-01       Impact factor: 4.267

8.  BRCA1/2 testing in hereditary breast and ovarian cancer families: effectiveness of problem-solving training as a counseling intervention.

Authors:  Aideen McInerney-Leo; Barbara Bowles Biesecker; Donald W Hadley; Ronald G Kase; Therese R Giambarresi; Elizabeth Johnson; Caryn Lerman; Jeffery P Struewing
Journal:  Am J Med Genet A       Date:  2004-10-15       Impact factor: 2.802

9.  Patient satisfaction with cancer genetic counseling: a psychometric analysis of the Genetic Counseling Satisfaction Scale.

Authors:  Tiffani A DeMarco; Beth N Peshkin; Bryn D Mars; Kenneth P Tercyak
Journal:  J Genet Couns       Date:  2004-08       Impact factor: 2.537

Review 10.  Primary-care providers' perceived barriers to integration of genetics services: a systematic review of the literature.

Authors:  Natalie A Mikat-Stevens; Ingrid A Larson; Beth A Tarini
Journal:  Genet Med       Date:  2014-09-11       Impact factor: 8.822

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  9 in total

1.  Roles of attitudes and injunctive norms in decisional conflict and disclosure following receipt of genome sequencing results.

Authors:  Allecia E Reid; Rebecca A Ferrer; Sanjana Kadirvel; Barbara B Biesecker; Katie L Lewis; Leslie G Biesecker; William M P Klein
Journal:  Soc Sci Med       Date:  2020-06-23       Impact factor: 4.634

Review 2.  Decision coaching for people making healthcare decisions.

Authors:  Janet Jull; Sascha Köpke; Maureen Smith; Meg Carley; Jeanette Finderup; Anne C Rahn; Laura Boland; Sandra Dunn; Andrew A Dwyer; Jürgen Kasper; Simone Maria Kienlin; France Légaré; Krystina B Lewis; Anne Lyddiatt; Claudia Rutherford; Junqiang Zhao; Tamara Rader; Ian D Graham; Dawn Stacey
Journal:  Cochrane Database Syst Rev       Date:  2021-11-08

3.  Perceptions of uncertainties about carrier results identified by exome sequencing in a randomized controlled trial.

Authors:  Kendall L Umstead; Paul K J Han; Katie L Lewis; Ilana M Miller; Charlotte L Hepler; Lydia J Thompson; Tyra G Wolfsberg; Anh-Dao Nguyen; Mark T Fredriksen; Gretchen Gibney; Erin Turbitt; Leslie G Biesecker; Barbara B Biesecker
Journal:  Transl Behav Med       Date:  2020-05-20       Impact factor: 3.046

Review 4.  Genetic Counseling and the Central Tenets of Practice.

Authors:  Barbara Biesecker
Journal:  Cold Spring Harb Perspect Med       Date:  2020-03-02       Impact factor: 6.915

5.  Development and early implementation of an Accessible, Relational, Inclusive and Actionable approach to genetic counseling: The ARIA model.

Authors:  Leslie Riddle; Laura M Amendola; Marian J Gilmore; Claudia Guerra; Barbara Biesecker; Tia L Kauffman; Katherine Anderson; Alan F Rope; Michael C Leo; Mikaella Caruncho; Gail P Jarvik; Benjamin Wilfond; Katrina A B Goddard; Galen Joseph
Journal:  Patient Educ Couns       Date:  2020-12-23

6.  Approaches to carrier testing and results disclosure in translational genomics research: The clinical sequencing exploratory research consortium experience.

Authors:  Kathryn M Porter; Tia L Kauffman; Barbara A Koenig; Katie L Lewis; Heidi L Rehm; Carolyn Sue Richards; Natasha T Strande; Holly K Tabor; Susan M Wolf; Yaping Yang; Laura M Amendola; Danielle R Azzariti; Jonathan S Berg; Katie Bergstrom; Leslie G Biesecker; Sawona Biswas; Kevin M Bowling; Wendy K Chung; Ellen W Clayton; Laura K Conlin; Gregory M Cooper; Matthew C Dulik; Levi A Garraway; Arezou A Ghazani; Robert C Green; Susan M Hiatt; Seema M Jamal; Gail P Jarvik; Katrina A B Goddard; Benjamin S Wilfond
Journal:  Mol Genet Genomic Med       Date:  2018-08-21       Impact factor: 2.183

Review 7.  Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review.

Authors:  Pedro Gomes; Giada Pietrabissa; Eunice R Silva; João Silva; Paula Mena Matos; Maria Emília Costa; Vanessa Bertuzzi; Eliana Silva; Maria Carolina Neves; Célia M D Sales
Journal:  Int J Environ Res Public Health       Date:  2022-01-30       Impact factor: 3.390

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

Authors:  Amy C Sturm; Tara Schmidlen; Laura Scheinfeldt; Shelly Hovick; Joseph P McElroy; Amanda E Toland; J Scott Roberts; Kevin Sweet
Journal:  J Pers Med       Date:  2018-07-25

9.  Impact of genetic testing on low-density lipoprotein cholesterol in patients with familial hypercholesterolemia (GenTLe-FH): a randomised waiting list controlled open-label study protocol.

Authors:  Akihiro Nomura; Hayato Tada; Hirofumi Okada; Atsushi Nohara; Hideki Ishikawa; Kenichi Yoshimura; Masa-Aki Kawashiri
Journal:  BMJ Open       Date:  2018-12-28       Impact factor: 2.692

  9 in total

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