Patient and genetic counselor perceptions of in-person versus telephone genetic counseling for hereditary breast/ovarian cancer

Aryana S Jacobs¹, Marc D Schwartz¹, Heiddis Valdimarsdottir^{2

3}, Rachel H Nusbaum⁴, Gillian W Hooker⁵, Tiffani A DeMarco⁶, Jessica E Heinzmann⁷, Wendy McKinnon⁸, Shelley R McCormick⁹, Claire Davis¹⁰, Andrea D Forman¹¹, Alexandra Perez Lebensohn¹², Emily Dalton¹³, Diana Moglia Tully⁴, Kristi D Graves¹, Morgan Similuk¹⁴, Scott Kelly¹⁵, Beth N Peshkin¹⁶

Affiliations

¹ Department of Oncology, Lombardi Comprehensive Cancer Center, Jess and Mildred Fisher Center for Hereditary Cancer and Clinical Genomics Research, Georgetown University Medical Center, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC, 20007, USA.
² Department of Oncological Sciences, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
³ Department of Psychology, Reykjavik University, Reykjavik, Iceland.
⁴ GeneDx, Gaithersburg, MD, USA.
⁵ NextGxDx, Inc., Franklin, TN, USA.
⁶ Cancer Genetic Counseling Program, Inova Translational Medicine Institute, Inova Health System, Falls Church, VA, USA.
⁷ Carol G. Simon Cancer Center, Atlantic Health Systems, Summit, NJ, USA.
⁸ Familial Cancer Program, University of Vermont Cancer Center, Burlington, VT, USA.
⁹ Center for Cancer Risk Assessment, Massachusetts General Hospital, Boston, MA, USA.
¹⁰ Joan H. Marks Graduate Program in Human Genetics, Sarah Lawrence College, Yonkers, NY, USA.
¹¹ Department of Clinical Genetics, Risk Assessment Program, Fox Chase Cancer Center, Philadelphia, PA, USA.
¹² Stanford Healthcare, Stanford Women's Cancer Center, Stanford, CA, USA.
¹³ Ambry Genetics, Aliso Viejo, CA, USA.
¹⁴ National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD, USA.
¹⁵ Department of Epidemiology and Biostatistics, George Washington University, Washington, DC, USA.
¹⁶ Department of Oncology, Lombardi Comprehensive Cancer Center, Jess and Mildred Fisher Center for Hereditary Cancer and Clinical Genomics Research, Georgetown University Medical Center, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC, 20007, USA. peshkinb@georgetown.edu.

PMID: 26969308
PMCID: PMC5011450
DOI: 10.1007/s10689-016-9900-x

Randomized Controlled Trial

Patient and genetic counselor perceptions of in-person versus telephone genetic counseling for hereditary breast/ovarian cancer

Aryana S Jacobs et al. Fam Cancer. 2016 Oct.

. 2016 Oct;15(4):529-39.

doi: 10.1007/s10689-016-9900-x.

Authors

Affiliations

¹ Department of Oncology, Lombardi Comprehensive Cancer Center, Jess and Mildred Fisher Center for Hereditary Cancer and Clinical Genomics Research, Georgetown University Medical Center, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC, 20007, USA.
² Department of Oncological Sciences, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
³ Department of Psychology, Reykjavik University, Reykjavik, Iceland.
⁴ GeneDx, Gaithersburg, MD, USA.
⁵ NextGxDx, Inc., Franklin, TN, USA.
⁶ Cancer Genetic Counseling Program, Inova Translational Medicine Institute, Inova Health System, Falls Church, VA, USA.
⁷ Carol G. Simon Cancer Center, Atlantic Health Systems, Summit, NJ, USA.
⁸ Familial Cancer Program, University of Vermont Cancer Center, Burlington, VT, USA.
⁹ Center for Cancer Risk Assessment, Massachusetts General Hospital, Boston, MA, USA.
¹⁰ Joan H. Marks Graduate Program in Human Genetics, Sarah Lawrence College, Yonkers, NY, USA.
¹¹ Department of Clinical Genetics, Risk Assessment Program, Fox Chase Cancer Center, Philadelphia, PA, USA.
¹² Stanford Healthcare, Stanford Women's Cancer Center, Stanford, CA, USA.
¹³ Ambry Genetics, Aliso Viejo, CA, USA.
¹⁴ National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD, USA.
¹⁵ Department of Epidemiology and Biostatistics, George Washington University, Washington, DC, USA.
¹⁶ Department of Oncology, Lombardi Comprehensive Cancer Center, Jess and Mildred Fisher Center for Hereditary Cancer and Clinical Genomics Research, Georgetown University Medical Center, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC, 20007, USA. peshkinb@georgetown.edu.

PMID: 26969308
PMCID: PMC5011450
DOI: 10.1007/s10689-016-9900-x

Abstract

Telephone genetic counseling (TC) for high-risk women interested in BRCA1/2 testing has been shown to yield positive outcomes comparable to usual care (UC; in-person) genetic counseling. However, little is known about how genetic counselors perceive the delivery of these alternate forms of genetic counseling. As part of a randomized trial of TC versus UC, genetic counselors completed a 5-item genetic counselor process questionnaire (GCQ) assessing key elements of pre-test sessions (information delivery, emotional support, addressing questions and concerns, tailoring of session, and facilitation of decision-making) with the 479 female participants (TC, N = 236; UC, N = 243). The GCQ scores did not differ for TC vs. UC sessions (t (477) = 0.11, p = 0.910). However, multivariate analysis showed that participant race/ethnicity significantly predicted genetic counselor perceptions (β = 0.172, p < 0.001) in that the GCQ scores were lower for minorities in TC and UC. Exploratory analyses suggested that GCQ scores may be associated with patient preference for UC versus TC (t (79) = 2.21, p = 0.030). Additionally, we found that genetic counselor ratings of session effectiveness were generally concordant with patient perceptions of the session. These data indicate that genetic counselors perceive that key components of TC can be delivered as effectively as UC, and that these elements may contribute to specific aspects of patient satisfaction. However, undefined process differences may be present which account for lower counselor perceptions about the effectiveness of their sessions with minority women (i.e., those other than non-Hispanic Whites). We discuss other potential clinical and research implications of our findings.

Keywords: BRCA1/BRCA2; Genetic counseling; Patient satisfaction; Telephone counseling.

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Conflict of interest statement

Ms. Jacobs, Dr. Valdimarsdottir, Ms. DeMarco, Ms. Heinzmann, Ms. McKinnon, Ms. Davis, Ms. Lebensohn, Dr. Graves, Ms. Similuk, Mr. Kelly, and Ms. Peshkin declare that they have no conflict of interest. Ms. Nusbaum and Ms. Moglia Tully are employees of GeneDx, a wholly owned subsidiary of BioReference Laboratories, which is a wholly owned subsidiary of Opko Health, Inc.; however, they were employed at one of the study sites when performing all study-related genetic counseling. Dr. Hooker is an employee of NextGxDx, but was employed at Georgetown University when performing study-related genetic counseling. Ms. Dalton is an employee of Ambry Genetics but was employed at Dana-Farber when performing all study-related genetic counseling. Ms. McCormick has received paid compensation from Myriad Genetics. Ms. Forman has received paid compensation from Myriad Genetics and Invitae. Dr. Schwartz serves as an uncompensated member of the Scientific Advisory Board for InformedDNA (St. Petersburg, FL).

Figures

**Figure 1**
Interaction between participant preference for modality of genetic counseling by group randomization and genetic counselor session rating* *Based on GCQ (genetic counselor process questionnaire) score; Plot lines for Usual Care and Telephone represent participants’ actual randomization group.

See this image and copyright information in PMC

References

1. Moyer VA. Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: U.S. Preventive Services Task Force recommendation statement. Ann Intern Med. 2014;160:271–281. - PubMed
1. National Comprehensive Cancer Network. [Accessed 26 October 2015];NCCN Clinical Practice Guidelines in Oncology. Genetic/Familial High-Risk Assessment: Breast and Ovarian. V.2.2015. http://www.nccn.org/professionals/physician_gls/pdf/genetics_screening.pdf.
1. Society of Gynecologic Oncology. [Accessed 26 October 2015];SGO Clinical Practice Statement: Genetic Testing for Ovarian Cancer. 2014 Oct; https://www.sgo.org/clinical-practice/guidelines/genetic-testing-for-ova...
1. Cigna. [Accessed 26 October 2015];Genetic testing and counseling program. http://www.cigna.com/healthcare-professionals/resources-for-health-care-....
1. Clain E, Trosman JR, Douglas MP, Weldon CB, Phillips KA. Availability and payer coverage of BRCA1/2 tests and gene panels. Nat Biotechnol. 2015;33:900–902. - PMC - PubMed

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Patient and genetic counselor perceptions of in-person versus telephone genetic counseling for hereditary breast/ovarian cancer

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Patient and genetic counselor perceptions of in-person versus telephone genetic counseling for hereditary breast/ovarian cancer

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