Gaps in receipt of clinically indicated genetic counseling after diagnosis of breast cancer

• Type of Material: Article
• Authors: Steven J. Katz, University of Michigan; Kevin Ward, Emory University; Ann S. Hamilton, University of Southern California; M. Chandler McLeod, University of Michigan; Lauren P. Wallner, University of Michigan; Monica Morrow, Memorial Sloan-Kettering Cancer Center; Reshma Jagsi, University of Michigan; Sarah T. Hawley, University of Michigan; Allison W. Kurian, Stanford University
• Language: English
• Date: 2018-04-20
• Publisher: American Society of Clinical Oncology
• Publication Version: Final Published Version
• Copyright Statement: © 2018 by American Society of Clinical Oncology.
• Final Published Version (URL): http://dx.doi.org/10.1200/JCO.2017.76.2369
• Title of Journal or Parent Work: Journal of Clinical Oncology
• ISSN: 0732-183X
• Volume: 36
• Issue: 12
• Start Page: 1218
• End Page: 1224
• Grant/Funding Information: The collection of cancer incidence data in Georgia was supported by contract HHSN261201300015I, Task Order HHSN26100006 from the National Cancer Institute and by cooperative agreement 5NU58DP003875-04-00 from the Centers for Disease Control and Prevention.; The collection of Los Angeles County cancer incidence data used in this study was supported by the California Department of Public Health pursuant to California Health and Safety Code Section 103885; the Centers for Disease Control and Prevention’s National Program of Cancer Registries, under cooperative agreement 5NU58DP003862-04/DP003862; the National Cancer Institute’s SEER program under contract HHSN261201000140C awarded to the Cancer Prevention Institute of California, contract HHSN261201000035C awarded to the University of Southern California, and contract HHSN261201000034C awarded to the Public Health Institute.; Supported by Grant P01 CA163233 to the University of Michigan from the National Cancer Institute.; Conducted work was also supported by the University of Michigan Cancer Center Biostatistics, Analytics and Bioinformatics shared resource (P30CA46592).
• Keywords: breast cancer; genetic test; early-stage; survey; community practices; higher-risk patients; genetic risk evaluation; genetic counseling
• Research Categories: Health Sciences, Oncology; Sociology, Public and Social Welfare

Abstract

Purpose: Little is known about the extent to which genetic counseling is integrated into community practices for patients newly diagnosed with breast cancer. We examined the receipt of clinically indicated genetic counseling in these patients. Patients and Methods: We surveyed 5,080 patients between the ages of 20 and 79 years, diagnosed from July 2013 to August 2015 with early-stage breast cancer and reported to the SEER registries of Georgia and Los Angeles County. Surveys were linked to SEER clinical data and genetic test results. The study sample (N = 1,711) comprised patients with indications for formal genetic risk evaluation. Results: Overall, 47.4% did not get tested, 40.7% tested negative, 7.4% had a variant of uncertain significance only, and 4.5% had a pathogenic mutation. Three quarters (74.6%) received some form of genetic counseling (43.5%, formal counseling and 31.1%, physician-directed discussion). Virtually all tested patients (96.1%) reported some form of genetic discussion (62.2%, formal counseling and 33.9%, physician-directed discussion). However, only one half (50.6%) of those not tested received any discussion about genetics. Younger women were more likely to report some type of counseling, controlling for other factors: Odds ratio, 4.5 (95% CI, 2.6 to 8.0); 1.9 (95% CI, 1.1 to 3.3); and 1.5 (95%CI, 1.0 to 2.3) for women younger than 50 years of age, 50 to 59 years of age, and 60 to 69 years of age versus those 70 years of age and older. Patients' assessments of the amount of information they received about whether to get tested were similarly high whether they were counseled by a genetics expert or by a physician only (80.8% v 79.4% stated information was just right, P =.59). Conclusion: Less than one half (43.5%) of patients with clinical indications received formal genetic counseling. There is a large gap between mandates for timely pretest formal genetic counseling in higher-risk patients and the reality of practice today.