Literature DB >> 30417332

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

Nina Beri1,2, Linda J Patrick-Miller3, Brian L Egleston4, Michael J Hall5, Susan M Domchek1,2, Mary B Daly5, Pamela Ganschow6, Generosa Grana7, Olufunmilayo I Olopade3, Dominique Fetzer1,2, Amanda Brandt1,2, Rachelle Chambers8, Dana F Clark7, Andrea Forman5, Rikki Gaber6, Cassandra Gulden8, Janice Horte7, Jessica Long1,2, Terra Lucas6, Shreshtha Madaan8, Kristin Mattie7, Danielle McKenna1,2, Susan Montgomery5, Sarah Nielsen8, Jacquelyn Powers1,2, Kim Rainey5, Christina Rybak5, Michelle Savage5, Christina Seelaus6, Jessica Stoll8, Jill E Stopfer1,2, Xinxin Shirley Yao7, Angela R Bradbury1,9,2.   

Abstract

Telephone disclosure of cancer genetic test results is noninferior to in-person disclosure. However, how patients who prefer in-person communication of results differ from those who agree to telephone disclosure is unclear but important when considering delivery models for genetic medicine. Patients undergoing cancer genetic testing were recruited to a multicenter, randomized, noninferiority trial (NCT01736345) comparing telephone to in-person disclosure of genetic test results. We evaluated preferences for in-person disclosure, factors associated with this preference and outcomes compared to those who agreed to randomization. Among 1178 enrolled patients, 208 (18%) declined randomization, largely given a preference for in-person disclosure. These patients were more likely to be older (P = 0.007) and to have had multigene panel testing (P < 0.001). General anxiety (P = 0.007), state anxiety (P = 0.008), depression (P = 0.011), cancer-specific distress (P = 0.021) and uncertainty (P = 0.03) were higher after pretest counseling. After disclosure of results, they also had higher general anxiety (P = 0.003), depression (P = 0.002) and cancer-specific distress (P = 0.043). While telephone disclosure is a reasonable alternative to in-person disclosure in most patients, some patients have a strong preference for in-person communication. Patient age, distress and complexity of testing are important factors to consider and requests for in-person disclosure should be honored when possible.
© 2018 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Entities:  

Keywords:  cancer genetic testing; genetic counseling; in-person disclosure preference; result disclosure; telephone disclosure

Year:  2018        PMID: 30417332      PMCID: PMC6453119          DOI: 10.1111/cge.13474

Source DB:  PubMed          Journal:  Clin Genet        ISSN: 0009-9163            Impact factor:   4.438


  28 in total

1.  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

2.  Models of service delivery for cancer genetic risk assessment and counseling.

Authors:  Angela M Trepanier; Dawn C Allain
Journal:  J Genet Couns       Date:  2013-10-26       Impact factor: 2.537

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

Authors:  Linda Patrick-Miller; Brian L Egleston; Mary Daly; Evelyn Stevens; Dominique Fetzer; Andrea Forman; Lisa Bealin; Christina Rybak; Candace Peterson; Melanie Corbman; Angela R Bradbury
Journal:  Patient Educ Couns       Date:  2013-08-19

4.  Expanding access to BRCA1/2 genetic counseling with telephone delivery: a cluster randomized trial.

Authors:  Anita Y Kinney; Karin M Butler; Marc D Schwartz; Jeanne S Mandelblatt; Kenneth M Boucher; Lisa M Pappas; Amanda Gammon; Wendy Kohlmann; Sandra L Edwards; Antoinette M Stroup; Saundra S Buys; Kristina G Flores; Rebecca A Campo
Journal:  J Natl Cancer Inst       Date:  2014-11-05       Impact factor: 13.506

Review 5.  Delivery of genomic medicine for common chronic adult diseases: a systematic review.

Authors:  Maren T Scheuner; Pauline Sieverding; Paul G Shekelle
Journal:  JAMA       Date:  2008-03-19       Impact factor: 56.272

6.  American Society of Clinical Oncology Policy Statement Update: Genetic and Genomic Testing for Cancer Susceptibility.

Authors:  Mark E Robson; Angela R Bradbury; Banu Arun; Susan M Domchek; James M Ford; Heather L Hampel; Stephen M Lipkin; Sapna Syngal; Dana S Wollins; Noralane M Lindor
Journal:  J Clin Oncol       Date:  2015-08-31       Impact factor: 44.544

7.  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

8.  Development of a tiered and binned genetic counseling model for informed consent in the era of multiplex testing for cancer susceptibility.

Authors:  Angela R Bradbury; Linda Patrick-Miller; Jessica Long; Jacquelyn Powers; Jill Stopfer; Andrea Forman; Christina Rybak; Kristin Mattie; Amanda Brandt; Rachelle Chambers; Wendy K Chung; Jane Churpek; Mary B Daly; Laura Digiovanni; Dana Farengo-Clark; Dominique Fetzer; Pamela Ganschow; Generosa Grana; Cassandra Gulden; Michael Hall; Lynne Kohler; Kara Maxwell; Shana Merrill; Susan Montgomery; Rebecca Mueller; Sarah Nielsen; Olufunmilayo Olopade; Kimberly Rainey; Christina Seelaus; Katherine L Nathanson; Susan M Domchek
Journal:  Genet Med       Date:  2014-10-09       Impact factor: 8.822

9.  Cancer genetic counseling: communication and counselees' post-visit satisfaction, cognitions, anxiety, and needs fulfillment.

Authors:  Arwen H Pieterse; Alexandra M van Dulmen; Frits A Beemer; Jozien M Bensing; Margreet G E M Ausems
Journal:  J Genet Couns       Date:  2007-02-13       Impact factor: 2.537

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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  6 in total

1.  Persistent Underutilization of BRCA1/2 Testing Suggest the Need for New Approaches to Genetic Testing Delivery.

Authors:  Anne Marie McCarthy
Journal:  J Natl Cancer Inst       Date:  2019-08-01       Impact factor: 13.506

2.  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

3.  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

4.  Patients' and professionals' perspective of non-in-person visits in hereditary cancer: predictors and impact of the COVID-19 pandemic.

Authors:  Adrià López-Fernández; Guillermo Villacampa; Elia Grau; Mónica Salinas; Esther Darder; Estela Carrasco; Sara Torres-Esquius; Silvia Iglesias; Ares Solanes; Neus Gadea; Angela Velasco; Gisela Urgell; Maite Torres; Noemí Tuset; Joan Brunet; Sergi Corbella; Judith Balmaña
Journal:  Genet Med       Date:  2021-04-06       Impact factor: 8.822

5.  Remote vs in-person BRCA1/2 non-carriers test disclosure: patients' choice during Covid-19 pandemic restriction.

Authors:  Silvia Costanzo; Simona De Summa; Leonarda Maurmo; Maria Digennaro; Margherita Patruno; Angelo Paradiso
Journal:  Fam Cancer       Date:  2022-07-22       Impact factor: 2.446

6.  Whether, when, how, and how much? General public's and cancer patients' views about the disclosure of genomic secondary findings.

Authors:  Jude Emmanuel Cléophat; Michel Dorval; Zaki El Haffaf; Jocelyne Chiquette; Stephanie Collins; Benjamin Malo; Vincent Fradet; Yann Joly; Hermann Nabi
Journal:  BMC Med Genomics       Date:  2021-06-26       Impact factor: 3.063

  6 in total

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