Literature DB >> 23420550

Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial.

Susan V Montgomery1, Andrea M Barsevick, Brian L Egleston, Ruth Bingler, Karen Ruth, Suzanne M Miller, John Malick, Terrence P Cescon, Mary B Daly.   

Abstract

This study reports a randomized clinical trial evaluating the efficacy of an intervention to prepare individuals to communicate BRCA1/BRCA2 results to family members. Women aged 18 years and older, who had genetic testing, and who had adult first-degree relatives, were randomly assigned to a communication skills-building intervention or a wellness control session. Primary outcomes were the percentage of probands sharing test results, and the level of distress associated with sharing. The ability of the theory of planned behavior variables to predict the outcomes was explored. Four hundred twenty-two women were enrolled in the study, 219 (intervention) and 203 (control). Data from 137 in the intervention group and 112 in the control group were analyzed. Two hundred forty-nine probands shared test results with 838 relatives (80.1 %). There were no significant differences between study groups in the primary outcomes. Combining data from both arms revealed that perceived control and specific social influence were associated with sharing. Probands were more likely to share genetic test results with their children, female relatives and relatives who they perceived had a favorable opinion about learning the results. The communication skills intervention did not impact sharing of test results. The proband's perception of her relative's opinion of genetic testing and her sense of control in relaying this information influenced sharing. Communication of test results is selective, with male relatives and parents less likely to be informed. Prevalent psychosocial factors play a role in the communication of genetic test results within families.

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Year:  2013        PMID: 23420550      PMCID: PMC3706561          DOI: 10.1007/s10689-013-9609-z

Source DB:  PubMed          Journal:  Fam Cancer        ISSN: 1389-9600            Impact factor:   2.375


  36 in total

1.  Communicating genetic test results to the family: a six-step, skills-building strategy.

Authors:  M B Daly; A Barsevick; S M Miller; R Buckman; J Costalas; S Montgomery; R Bingler
Journal:  Fam Community Health       Date:  2001-10

2.  Can the Theory of Planned Behaviour mediate the effects of age, gender and multidimensional health locus of control?

Authors:  Christopher J. Armitage; Paul Norman; Mark Conner
Journal:  Br J Health Psychol       Date:  2002-09

Review 3.  Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information.

Authors:  Gillian Nycum; Denise Avard; Bartha M Knoppers
Journal:  Eur J Hum Genet       Date:  2009-03-25       Impact factor: 4.246

4.  Health first, genetics second: exploring families' experiences of communicating genetic information.

Authors:  Laura E Forrest; Lisette Curnow; Martin B Delatycki; Loane Skene; Maryanne Aitken
Journal:  Eur J Hum Genet       Date:  2008-05-21       Impact factor: 4.246

5.  Effects of coping style and BRCA1 and BRCA2 test results on anxiety among women participating in genetic counseling and testing for breast and ovarian cancer risk.

Authors:  K P Tercyak; C Lerman; B N Peshkin; C Hughes; D Main; C Isaacs; M D Schwartz
Journal:  Health Psychol       Date:  2001-05       Impact factor: 4.267

6.  Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threat.

Authors:  S M Miller
Journal:  J Pers Soc Psychol       Date:  1987-02

7.  Genetic uptake in BRCA-mutation families is related to emotional and behavioral communication characteristics of index patients.

Authors:  Karin Landsbergen; Chris Verhaak; Floor Kraaimaat; Nicoline Hoogerbrugge
Journal:  Fam Cancer       Date:  2005       Impact factor: 2.375

8.  Family communication matters: the impact of telling relatives about unclassified variants and uninformative DNA-test results.

Authors:  Joël Vos; Anna M Jansen; Fred Menko; Christi J van Asperen; Anne M Stiggelbout; Aad Tibben
Journal:  Genet Med       Date:  2011-04       Impact factor: 8.822

9.  American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility.

Authors: 
Journal:  J Clin Oncol       Date:  2003-04-11       Impact factor: 44.544

10.  Psychological factors linked to self-reported depression symptoms in late adolescence.

Authors:  Melanie Smith; Rachel Calam; Catherine Bolton
Journal:  Behav Cogn Psychother       Date:  2009-01
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  35 in total

Review 1.  How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence.

Authors:  Álvaro Mendes; Milena Paneque; Liliana Sousa; Angus Clarke; Jorge Sequeiros
Journal:  Eur J Hum Genet       Date:  2015-08-12       Impact factor: 4.246

2.  The uptake of presymptomatic genetic testing in hereditary breast-ovarian cancer and Lynch syndrome: a systematic review of the literature and implications for clinical practice.

Authors:  Fred H Menko; Jacqueline A Ter Stege; Lizet E van der Kolk; Kiki N Jeanson; Winnie Schats; Daoud Ait Moha; Eveline M A Bleiker
Journal:  Fam Cancer       Date:  2019-01       Impact factor: 2.375

Review 3.  Family Communication, Risk Perception and Cancer Knowledge of Young Adults from BRCA1/2 Families: a Systematic Review.

Authors:  Alison L Young; Phyllis N Butow; Janine Vetsch; Veronica F Quinn; Andrea F Patenaude; Katherine M Tucker; Claire E Wakefield
Journal:  J Genet Couns       Date:  2017-06-30       Impact factor: 2.537

Review 4.  Disparities in gynecologic cancer genetics evaluation.

Authors:  Emily M Hinchcliff; Erica M Bednar; Karen H Lu; J Alejandro Rauh-Hain
Journal:  Gynecol Oncol       Date:  2019-01-31       Impact factor: 5.482

5.  A Family-Centered Model for Sharing Genetic Risk.

Authors:  Mary B Daly
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

6.  A genetic counseling intervention to facilitate family communication about inherited conditions.

Authors:  Clara Gaff; Jan Hodgson
Journal:  J Genet Couns       Date:  2014-03-01       Impact factor: 2.537

7.  Patterns of family communication and preferred resources for sharing information among families with a Lynch syndrome diagnosis.

Authors:  Jenna Petersen; Cathryn Koptiuch; Yelena P Wu; Ryan Mooney; Ashley Elrick; Kathryn Szczotka; Megan Keener; Lisa Pappas; Priyanka Kanth; Andrew Soisson; Wendy Kohlmann; Kimberly A Kaphingst
Journal:  Patient Educ Couns       Date:  2018-07-26

8.  Development of FamilyTalk: an Intervention to Support Communication and Educate Families About Colorectal Cancer Risk.

Authors:  Deborah J Bowen; Travis Hyams; Mercy Laurino; Timothy Woolley; Stacey Cohen; Kathleen A Leppig; Gail Jarvik
Journal:  J Cancer Educ       Date:  2020-06       Impact factor: 2.037

Review 9.  Barriers and facilitators for cascade testing in genetic conditions: a systematic review.

Authors:  Swetha Srinivasan; Nae Yeon Won; W David Dotson; Sarah T Wright; Megan C Roberts
Journal:  Eur J Hum Genet       Date:  2020-09-18       Impact factor: 4.246

10.  The big reveal: Family disclosure patterns of BRCA genetic test results among young Black women with invasive breast cancer.

Authors:  Claire C Conley; Dana Ketcher; Maija Reblin; Monica L Kasting; Deborah Cragun; Jongphil Kim; Kimlin Tam Ashing; Cheryl L Knott; Chanita Hughes-Halbert; Tuya Pal; Susan T Vadaparampil
Journal:  J Genet Couns       Date:  2020-01-07       Impact factor: 2.537

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