Literature DB >> 19462222

Telephoned BRCA1/2 genetic test results: prevalence, practice, and patient satisfaction.

L Baumanis1, J P Evans, N Callanan, L R Susswein.   

Abstract

While the traditional model of genetic evaluation for breast cancer risk recommended face-to-face disclosure of genetic testing results, BRCA1/2 testing results are increasingly provided by telephone. The few existing studies on telephone genetic counseling provide conflicting results about its desirability and efficacy. The current study aimed to (1) Estimate the prevalence among genetic counselors of providing BRCA1/2 genetic test results by phone (2) Assess patient satisfaction with results delivered by telephone versus in-person. A survey was sent to members of the Familial Cancer Risk Counseling Special Interest Group via the NSGC listserve and was completed by 107 individuals. Additionally, 137 patients who had received BRCA genetic testing results either by phone or in-person at UNC Chapel Hill Cancer Genetics Clinic were surveyed regarding satisfaction with the mode of their BRCA1/2 results delivery. The genetic counseling survey revealed that the majority of responding counselors (92.5%) had delivered BRCA1/2 genetic test results by telephone. Patients having received results either in person or by phone reported no difference in satisfaction. Most patients chose to receive results by phone and those given a choice of delivery mode reported significantly higher satisfaction than those who did not have a choice. Those who waited less time to receive results once they knew they were ready also reported higher satisfaction. This study found supportive results for the routine provision of BRCA1/2 genetic test results by telephone. Results suggest that test results should be delivered as swiftly as possible once available and that offering patients a choice of how to receive results is desirable. These are especially important issues as genetic testing becomes more commonplace in medicine.

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Year:  2009        PMID: 19462222     DOI: 10.1007/s10897-009-9238-8

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  8 in total

1.  Patient satisfaction of BRCA1/2 genetic testing by women at high risk for breast cancer participating in a prevention trial.

Authors:  Jennifer R Klemp; Anne O'Dea; Carolyn Chamberlain; Carol J Fabian
Journal:  Fam Cancer       Date:  2005       Impact factor: 2.375

2.  Recommendations for Telephone Counseling.

Authors:  K E Ormond; J Haun; L Cook; D Duquette; C Ludowese; A L Matthews
Journal:  J Genet Couns       Date:  2000-02       Impact factor: 2.537

3.  Guidelines for the molecular genetics predictive test in Huntington's disease. International Huntington Association (IHA) and the World Federation of Neurology (WFN) Research Group on Huntington's Chorea.

Authors: 
Journal:  Neurology       Date:  1994-08       Impact factor: 9.910

4.  BRCA1/2 genetic testing in the community setting.

Authors:  Wendy Y Chen; Judy E Garber; Suzanne Higham; Katherine A Schneider; Katie B Davis; Amie M Deffenbaugh; Thomas S Frank; Rebecca S Gelman; Frederick P Li
Journal:  J Clin Oncol       Date:  2002-11-15       Impact factor: 44.544

5.  Results of a randomized study of telephone versus in-person breast cancer risk counseling.

Authors:  Almut W Helmes; Julie O Culver; Deborah J Bowen
Journal:  Patient Educ Couns       Date:  2006-01-19

Review 6.  Genetic cancer risk assessment and counseling: recommendations of the national society of genetic counselors.

Authors:  Angela Trepanier; Mary Ahrens; Wendy McKinnon; June Peters; Jill Stopfer; Sherry Campbell Grumet; Susan Manley; Julie O Culver; Ronald Acton; Joy Larsen-Haidle; Lori Ann Correia; Robin Bennett; Barbara Pettersen; Terri Diamond Ferlita; Josephine Wagner Costalas; Katherine Hunt; Susan Donlon; Cecile Skrzynia; Carolyn Farrell; Faith Callif-Daley; Catherine Walsh Vockley
Journal:  J Genet Couns       Date:  2004-04       Impact factor: 2.537

7.  Randomized comparison of phone versus in-person BRCA1/2 predisposition genetic test result disclosure counseling.

Authors:  Jean Jenkins; Kathleen A Calzone; Eileen Dimond; David J Liewehr; Seth M Steinberg; Oxana Jourkiv; Pam Klein; Peter W Soballe; Sheila A Prindiville; Ilan R Kirsch
Journal:  Genet Med       Date:  2007-08       Impact factor: 8.822

8.  Telephone genetic counseling for high-risk women undergoing BRCA1 and BRCA2 testing: rationale and development of a randomized controlled trial.

Authors:  Beth N Peshkin; Tiffani A Demarco; Kristi D Graves; Karen Brown; Rachel H Nusbaum; Diana Moglia; Andrea Forman; Heiddis Valdimarsdottir; Marc D Schwartz
Journal:  Genet Test       Date:  2008-03
  8 in total
  32 in total

1.  Genetic counselor opinions of, and experiences with telephone communication of BRCA1/2 test results.

Authors:  A R Bradbury; L Patrick-Miller; D Fetzer; B Egleston; S A Cummings; A Forman; L Bealin; C Peterson; M Corbman; J O'Connell; M B Daly
Journal:  Clin Genet       Date:  2010-10-12       Impact factor: 4.438

2.  Predictive Genetic Testing and Alternatives to Face to Face Results Disclosure: A Retrospective Review of Patients Preference for Alternative Modes of BRCA 1 and 2 Results Disclosure in the Republic of Ireland.

Authors:  Rosie O'Shea; Marie Meany; Cliona Carroll; Nuala Cody; David Healy; Andrew Green; Sally Ann Lynch
Journal:  J Genet Couns       Date:  2015-09-26       Impact factor: 2.537

3.  Retrospective comparison of patient outcomes after in-person and telephone results disclosure counseling for BRCA1/2 genetic testing.

Authors:  Courtney Doughty Rice; Jennifer Gamm Ruschman; Lisa J Martin; Jennifer B Manders; Erin Miller
Journal:  Fam Cancer       Date:  2010-06       Impact factor: 2.375

4.  Understanding of multigene test results among males undergoing germline testing for inherited prostate cancer: Implications for genetic counseling.

Authors:  Veda N Giri; Elias Obeid; Sarah E Hegarty; Laura Gross; Lisa Bealin; Colette Hyatt; Carolyn Y Fang; Amy Leader
Journal:  Prostate       Date:  2018-04-14       Impact factor: 4.104

5.  A Comparison of Telephone Genetic Counseling and In-Person Genetic Counseling from the Genetic Counselor's Perspective.

Authors:  Kelly R Burgess; Erin P Carmany; Angela M Trepanier
Journal:  J Genet Couns       Date:  2015-06-06       Impact factor: 2.537

6.  The Alpha-1 Association Genetic Counseling Program: an innovative approach to service.

Authors:  Dawn McGee; Charlie Strange; Rebecca McClure; Laura Schwarz; Marlene Erven
Journal:  J Genet Couns       Date:  2011-03-19       Impact factor: 2.537

7.  Randomized noninferiority trial of telephone versus in-person genetic counseling for hereditary breast and ovarian cancer.

Authors:  Marc D Schwartz; Heiddis B Valdimarsdottir; Beth N Peshkin; Jeanne Mandelblatt; Rachel Nusbaum; An-Tsun Huang; Yaojen Chang; Kristi Graves; Claudine Isaacs; Marie Wood; Wendy McKinnon; Judy Garber; Shelley McCormick; Anita Y Kinney; George Luta; Sarah Kelleher; Kara-Grace Leventhal; Patti Vegella; Angie Tong; Lesley King
Journal:  J Clin Oncol       Date:  2014-01-21       Impact factor: 44.544

8.  Operationalizing the Reciprocal Engagement Model of Genetic Counseling Practice: a Framework for the Scalable Delivery of Genomic Counseling and Testing.

Authors:  Tara Schmidlen; Amy C Sturm; Shelly Hovick; Laura Scheinfeldt; J Scott Roberts; Lindsey Morr; Joseph McElroy; Amanda E Toland; Michael Christman; Julianne M O'Daniel; Erynn S Gordon; Barbara A Bernhardt; Kelly E Ormond; Kevin Sweet
Journal:  J Genet Couns       Date:  2018-02-19       Impact factor: 2.537

9.  Genetic Counselors' Experiences and Interest in Telegenetics and Remote Counseling.

Authors:  Heather A Zierhut; Ian M MacFarlane; Zahra Ahmed; Jill Davies
Journal:  J Genet Couns       Date:  2018-01-23       Impact factor: 2.537

10.  Preferences for in-person disclosure: Patients declining telephone disclosure characteristics and outcomes in the multicenter Communication Of GENetic Test Results by Telephone study.

Authors:  Nina Beri; Linda J Patrick-Miller; Brian L Egleston; Michael J Hall; Susan M Domchek; Mary B Daly; Pamela Ganschow; Generosa Grana; Olufunmilayo I Olopade; Dominique Fetzer; Amanda Brandt; Rachelle Chambers; Dana F Clark; Andrea Forman; Rikki Gaber; Cassandra Gulden; Janice Horte; Jessica Long; Terra Lucas; Shreshtha Madaan; Kristin Mattie; Danielle McKenna; Susan Montgomery; Sarah Nielsen; Jacquelyn Powers; Kim Rainey; Christina Rybak; Michelle Savage; Christina Seelaus; Jessica Stoll; Jill E Stopfer; Xinxin Shirley Yao; Angela R Bradbury
Journal:  Clin Genet       Date:  2018-12-07       Impact factor: 4.438

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