Literature DB >> 24075727

Implementation and outcomes of telephone disclosure of clinical BRCA1/2 test results.

Linda Patrick-Miller1, Brian L Egleston, Mary Daly, Evelyn Stevens, Dominique Fetzer, Andrea Forman, Lisa Bealin, Christina Rybak, Candace Peterson, Melanie Corbman, Angela R Bradbury.   

Abstract

OBJECTIVES: With an increasing demand for genetic services, effective and efficient delivery models for genetic testing are needed.
METHODS: In this prospective single-arm communication study, participants received clinical BRCA1/2 results by telephone with a genetic counselor and completed surveys at baseline, after telephone disclosure (TD) and after in-person clinical follow-up.
RESULTS: Sixty percent of women agreed to participate; 73% of decliners preferred in-person communication. Anxiety decreased from baseline to post-TD (p=0.03) and satisfaction increased (p<0.01). Knowledge did not change significantly from baseline to post-TD, but was higher post-clinical follow-up (p=0.04). Cancer patients had greater declines in state anxiety and African-American participants reported less increase in satisfaction. 28% of participants did not return for in-person clinical follow-up, particularly those with less formal education, and higher post-disclosure anxiety and depression (p<0.01).
CONCLUSIONS: Telephone disclosure of BRCA1/2 test results may not be associated with negative cognitive and affective responses among willing patients, although some subgroups may experience less favorable responses. Some patients do not return for in-person clinical follow-up and longitudinal outcomes are unknown. PRACTICE IMPLICATIONS: Further evaluation of longitudinal outcomes of telephone disclosure and differences among subgroups can inform how to best incorporate telephone communication into delivery of genetic services.
Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

Entities:  

Keywords:  Cancer risk assessment; Cancer susceptibility; Communication; Genetic testing

Mesh:

Year:  2013        PMID: 24075727      PMCID: PMC4199583          DOI: 10.1016/j.pec.2013.08.009

Source DB:  PubMed          Journal:  Patient Educ Couns        ISSN: 0738-3991


  45 in total

1.  Using the common sense model to understand perceived cancer risk in individuals testing for BRCA1/2 mutations.

Authors:  Kimberly Kelly; Howard Leventhal; Michael Andrykowski; Deborah Toppmeyer; Judy Much; James Dermody; Monica Marvin; Jill Baran; Marvin Schwalb
Journal:  Psychooncology       Date:  2005-01       Impact factor: 3.894

2.  Personalized medicine in the era of genomics.

Authors:  Wylie Burke; Bruce M Psaty
Journal:  JAMA       Date:  2007-10-10       Impact factor: 56.272

3.  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

4.  Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors.

Authors:  Bronson D Riley; Julie O Culver; Cécile Skrzynia; Leigha A Senter; June A Peters; Josephine W Costalas; Faith Callif-Daley; Sherry C Grumet; Katherine S Hunt; Rebecca S Nagy; Wendy C McKinnon; Nancie M Petrucelli; Robin L Bennett; Angela M Trepanier
Journal:  J Genet Couns       Date:  2011-12-02       Impact factor: 2.537

5.  A brief assessment of concerns associated with genetic testing for cancer: the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire.

Authors:  David Cella; Chanita Hughes; Amy Peterman; Chih-Hung Chang; Beth N Peshkin; Marc D Schwartz; Lari Wenzel; Amy Lemke; Alfred C Marcus; Caryn Lerman
Journal:  Health Psychol       Date:  2002-11       Impact factor: 4.267

Review 6.  A literature review of the psychological impact of genetic testing on breast cancer patients.

Authors:  Kathryn J Schlich-Bakker; Herman F J ten Kroode; Margreet G E M Ausems
Journal:  Patient Educ Couns       Date:  2005-10-19

Review 7.  Genetics, genomics, and cancer risk assessment: State of the Art and Future Directions in the Era of Personalized Medicine.

Authors:  Jeffrey N Weitzel; Kathleen R Blazer; Deborah J MacDonald; Julie O Culver; Kenneth Offit
Journal:  CA Cancer J Clin       Date:  2011-08-19       Impact factor: 508.702

8.  Disclosing individual CDKN2A research results to melanoma survivors: interest, impact, and demands on researchers.

Authors:  Kurt D Christensen; J Scott Roberts; David I Shalowitz; Jessica N Everett; Scott Y H Kim; Leon Raskin; Stephen B Gruber
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2011-02-09       Impact factor: 4.254

9.  Genetic counseling for families with inherited susceptibility to breast and ovarian cancer.

Authors:  B B Biesecker; M Boehnke; K Calzone; D S Markel; J E Garber; F S Collins; B L Weber
Journal:  JAMA       Date:  1993-04-21       Impact factor: 56.272

10.  A randomized trial of specialist genetic assessment: psychological impact on women at different levels of familial breast cancer risk.

Authors:  K Brain; P Norman; J Gray; C Rogers; R Mansel; P Harper
Journal:  Br J Cancer       Date:  2002-01-21       Impact factor: 7.640

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  13 in total

1.  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

2.  Randomized Noninferiority Trial of Telephone vs In-Person Disclosure of Germline Cancer Genetic Test Results.

Authors:  Angela R Bradbury; 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 M 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
Journal:  J Natl Cancer Inst       Date:  2018-09-01       Impact factor: 13.506

Review 3.  Understanding patient and provider perceptions and expectations of genomic medicine.

Authors:  Michael J Hall; Andrea D Forman; Susan V Montgomery; Kim L Rainey; Mary B Daly
Journal:  J Surg Oncol       Date:  2014-07-03       Impact factor: 3.454

4.  Use and Patient-Reported Outcomes of Clinical Multigene Panel Testing for Cancer Susceptibility in the Multicenter Communication of Genetic Test Results by Telephone Study.

Authors:  Michael J Hall; Linda J Patrick-Miller; Brian L Egleston; 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 M 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
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5.  Patient feedback and early outcome data with a novel tiered-binned model for multiplex breast cancer susceptibility testing.

Authors:  Angela R Bradbury; Linda J Patrick-Miller; Brian L Egleston; Laura DiGiovanni; Jamie Brower; Diana Harris; Evelyn M Stevens; Kara N Maxwell; Abha Kulkarni; Tyler Chavez; Amanda Brandt; Jessica M Long; Jacquelyn Powers; Jill E Stopfer; Katherine L Nathanson; Susan M Domchek
Journal:  Genet Med       Date:  2015-04-02       Impact factor: 8.822

6.  Development of a communication protocol for telephone disclosure of genetic test results for cancer predisposition.

Authors:  Linda J Patrick-Miller; Brian L Egleston; Dominique Fetzer; Andrea Forman; Lisa Bealin; Christina Rybak; Candace Peterson; Melanie Corbman; Julio Albarracin; Evelyn Stevens; Mary B Daly; Angela R Bradbury
Journal:  JMIR Res Protoc       Date:  2014-10-29

7.  Returning Individual Genetic Research Results to Research Participants: Uptake and Outcomes Among Patients With Breast Cancer.

Authors:  Angela R Bradbury; Linda Patrick-Miller; Brian L Egleston; Kara N Maxwell; Laura DiGiovanni; Jamie Brower; Dominique Fetzer; Jill Bennett Gaieski; Amanda Brandt; Danielle McKenna; Jessica Long; Jacquelyn Powers; Jill E Stopfer; Katherine L Nathanson; Susan M Domchek
Journal:  JCO Precis Oncol       Date:  2018-04-16

8.  Utilizing Remote Real-Time Videoconferencing to Expand Access to Cancer Genetic Services in Community Practices: A Multicenter Feasibility Study.

Authors:  Angela Bradbury; Linda Patrick-Miller; Diana Harris; Evelyn Stevens; Brian Egleston; Kyle Smith; Rebecca Mueller; Amanda Brandt; Jill Stopfer; Shea Rauch; Andrea Forman; Rebecca Kim; Dominique Fetzer; Linda Fleisher; Mary Daly; Susan Domchek
Journal:  J Med Internet Res       Date:  2016-02-01       Impact factor: 5.428

9.  A randomized controlled trial of disclosing genetic risk information for Alzheimer disease via telephone.

Authors:  Kurt D Christensen; Wendy R Uhlmann; J Scott Roberts; Erin Linnenbringer; Peter J Whitehouse; Charmaine D M Royal; Thomas O Obisesan; L Adrienne Cupples; Melissa B Butson; Grace-Ann Fasaye; Susan Hiraki; Clara A Chen; Uwe Siebert; Robert Cook-Deegan; Robert C Green
Journal:  Genet Med       Date:  2017-07-20       Impact factor: 8.822

10.  Implementation of Germline Testing for Prostate Cancer: Philadelphia Prostate Cancer Consensus Conference 2019.

Authors:  Veda N Giri; Karen E Knudsen; William K Kelly; Heather H Cheng; Kathleen A Cooney; Michael S Cookson; William Dahut; Scott Weissman; Howard R Soule; Daniel P Petrylak; Adam P Dicker; Saud H AlDubayan; Amanda E Toland; Colin C Pritchard; Curtis A Pettaway; Mary B Daly; James L Mohler; J Kellogg Parsons; Peter R Carroll; Robert Pilarski; Amie Blanco; Ashley Woodson; Alanna Rahm; Mary-Ellen Taplin; Thomas J Polascik; Brian T Helfand; Colette Hyatt; Alicia K Morgans; Felix Feng; Michael Mullane; Jacqueline Powers; Raoul Concepcion; Daniel W Lin; Richard Wender; James Ryan Mark; Anthony Costello; Arthur L Burnett; Oliver Sartor; William B Isaacs; Jianfeng Xu; Jeffrey Weitzel; Gerald L Andriole; Himisha Beltran; Alberto Briganti; Lindsey Byrne; Anne Calvaresi; Thenappan Chandrasekar; David Y T Chen; Robert B Den; Albert Dobi; E David Crawford; James Eastham; Scott Eggener; Matthew L Freedman; Marc Garnick; Patrick T Gomella; Nathan Handley; Mark D Hurwitz; Joseph Izes; R Jeffrey Karnes; Costas Lallas; Lucia Languino; Stacy Loeb; Ana Maria Lopez; Kevin R Loughlin; Grace Lu-Yao; S Bruce Malkowicz; Mark Mann; Patrick Mille; Martin M Miner; Todd Morgan; Jose Moreno; Lorelei Mucci; Ronald E Myers; Sarah M Nielsen; Brock O'Neil; Wayne Pinover; Peter Pinto; Wendy Poage; Ganesh V Raj; Timothy R Rebbeck; Charles Ryan; Howard Sandler; Matthew Schiewer; E Michael D Scott; Brittany Szymaniak; William Tester; Edouard J Trabulsi; Neha Vapiwala; Evan Y Yu; Charnita Zeigler-Johnson; Leonard G Gomella
Journal:  J Clin Oncol       Date:  2020-06-09       Impact factor: 44.544

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