Literature DB >> 26407988

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.

Rosie O'Shea1, Marie Meany2, Cliona Carroll2, Nuala Cody2, David Healy2, Andrew Green2, Sally Ann Lynch2.   

Abstract

The traditional model of providing cancer predictive testing services is changing. Many genetic centres are now offering a choice to patients in how they receive their results instead of the typical face-to-face disclosure. In view of this shift in practice and the increasing demand on the ROI cancer predictive testing service, a 2 year retrospective study on patient preference in how to receive a Breast Cancer (BRCA) predictive result was carried out. Results showed that 71.7 % of respondents would have liked to have the option of obtaining their results by telephone or by letter. However, when asked about their actual experience of BRCA predictive results disclosure 40.6 % did still value the face-to-face contact, while 44.9 % would still have preferred to receive results by either post or telephone. No significant difference was found between males and females (p > 0.05) and those who tested negative or positive for the BRCA mutation (p > 0.05) in wanting a choice in how their results were disclosed. While the majority expressed a wish to have a choice in how to receive their results, it is important not to underestimate the value of a face-to-face encounter in these circumstances.

Entities:  

Keywords:  Alternative; BRCA predictive; Results disclosure

Mesh:

Year:  2015        PMID: 26407988     DOI: 10.1007/s10897-015-9887-8

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


  21 in total

1.  Evaluation of a counselling protocol for predictive genetic testing for hereditary non-polyposis colorectal cancer.

Authors:  K Aktan-Collan; J P Mecklin; A de la Chapelle; P Peltomäki; A Uutela; H Kääriäinen
Journal:  J Med Genet       Date:  2000-02       Impact factor: 6.318

2.  Long-term reactions to genetic testing for BRCA1 and BRCA2 mutations: does time heal women's concerns?

Authors:  Chanita Hughes Halbert; Jill E Stopfer; Jasmine McDonald; Benita Weathers; Aliya Collier; Andrea B Troxel; Susan Domchek
Journal:  J Clin Oncol       Date:  2011-10-11       Impact factor: 44.544

3.  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

4.  Assessment of the Effectiveness of Genetic Counseling by Telephone Compared to a Clinic Visit.

Authors:  Karan K Sangha; Anita Dircks; Sylvie Langlois
Journal:  J Genet Couns       Date:  2003-04       Impact factor: 2.537

5.  Assessment of clinical practices among cancer genetic counselors.

Authors:  Deborah Wham; Thuy Vu; Gayun Chan-Smutko; Christine Kobelka; Diana Urbauer; Brandie Heald
Journal:  Fam Cancer       Date:  2010-09       Impact factor: 2.375

6.  Telephone vs. face-to-face notification of HIV results in high-risk youth.

Authors:  Rachel C Tsu; Michael L Burm; Jennifer A Gilhooly; C Wayne Sells
Journal:  J Adolesc Health       Date:  2002-03       Impact factor: 5.012

Review 7.  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

8.  Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling.

Authors:  A Liede; K Metcalfe; D Hanna; E Hoodfar; C Snyder; C Durham; H T Lynch; S A Narod
Journal:  Am J Hum Genet       Date:  2000-11-03       Impact factor: 11.025

9.  Real world experience with cancer genetic counseling via telephone.

Authors:  Rebecca Sutphen; Barbara Davila; Heather Shappell; Tricia Holtje; Susan Vadaparampil; Sue Friedman; Michele Toscano; Joanne Armstrong
Journal:  Fam Cancer       Date:  2010-12       Impact factor: 2.375

Review 10.  Risk assessment and genetic counseling for hereditary breast and ovarian cancer: recommendations of the National Society of Genetic Counselors.

Authors:  Janice L Berliner; Angela Musial Fay
Journal:  J Genet Couns       Date:  2007-05-17       Impact factor: 2.717

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  4 in total

1.  Do research participants share genomic screening results with family members?

Authors:  Julia Wynn; Hila Milo Rasouly; Tania Vasquez-Loarte; Akilan M Saami; Robyn Weiss; Sonja I Ziniel; Paul S Appelbaum; Ellen Wright Clayton; Kurt D Christensen; David Fasel; Robert C Green; Heather S Hain; Margaret Harr; Christin Hoell; Iftikhar J Kullo; Kathleen A Leppig; Melanie F Myers; Joel E Pacyna; Emma F Perez; Cynthia A Prows; Alanna Kulchak Rahm; Gemme Campbell-Salome; Richard R Sharp; Maureen E Smith; Georgia L Wiesner; Janet L Williams; Carrie L Blout Zawatsky; Ali G Gharavi; Wendy K Chung; Ingrid A Holm
Journal:  J Genet Couns       Date:  2021-10-19       Impact factor: 2.717

2.  Knowledge and psychosocial impact of genetic counseling and multigene panel testing among individuals with ovarian cancer.

Authors:  Rachel A Pozzar; Fangxin Hong; Niya Xiong; Jill E Stopfer; Manan M Nayak; Meghan Underhill-Blazey
Journal:  Fam Cancer       Date:  2021-03-10       Impact factor: 2.375

3.  Alzheimer's Prevention Initiative Generation Program: Development of an APOE genetic counseling and disclosure process in the context of clinical trials.

Authors:  Carolyn M Langlois; Angela Bradbury; Elisabeth M Wood; J Scott Roberts; Scott Y H Kim; Marie-Emmanuelle Riviere; Fonda Liu; Eric M Reiman; Pierre N Tariot; Jason Karlawish; Jessica B Langbaum
Journal:  Alzheimers Dement (N Y)       Date:  2019-11-06

4.  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

  4 in total

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