Validity of self-reported genetic counseling and genetic testing use among breast cancer survivors
Purchase on Springer.com
$39.95 / €34.95 / £29.95*
Rent the article at a discountRent now
* Final gross prices may vary according to local VAT.
Despite the value of genetic counseling (GC) and genetic testing (GT) for high-risk breast cancer survivors, little is known about their uptake and validity of self-report data. This study evaluated the accuracy of self-reported genetic counseling and testing rates among breast cancer survivors.
The current analysis focused on Stage 0-III female breast cancer survivors who were identified from an academic medical center’s cancer registry and responded to a mailed survey (N = 452). Self-reported rates of GC and GT were validated using information from the electronic medical record.
Overall, 30.8 % of survivors reported having seen a genetic counselor in the time period after their breast cancer diagnosis and 33.6 % noted having a genetic test. Concordance and specificity were good for both genetic questions; concordance agreements ranged from 86–88 %, while specificity was 83–86 %. Sensitivity (97–98 %) and negative predictive values (99 %) were excellent, while the positive predictive values for both GC and GT were poor (59–63 %).
Among breast cancer survivors, self-reports of GC and GT were generally accurate, although a subset of respondents overestimated genetic service utilization. Future work should focus on validating GC and GT self-reports in medically underserved populations.
Implications for Cancer Survivors
Genetic counseling and testing are valuable aspects of survivorship care for high-risk breast cancer survivors; accurate understanding of their use is important for survivors, clinicians, and researchers.
- American Cancer Society, “Breast Cancer: Detailed Guide,” 2012. [Online]. Available: http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-key-statistics. [Accessed 22 February 2013].
- Griffith GL, Edwards RT, Gray J. Cancer genetics services: a systematic review of the economic evidence and issues. Br J Cancer. 2004;90(9):1697–703.
- NCCN, Inc., NCCN clinical practice guidelines in oncology: genetic/familial high-risk assessment: breast and ovarian. Inc, Fort Washington: National Comprehensive Cancer Network; 2012.
- Trepanier A, Ahrens M, McKinnon W, Peters J, Stopfer J, Campbell Grumet S, et al. Genetic cancer risk assessment and counseling: recommendations of the National society of Genetic Counselors. J Genet Couns. 2004;13(2):83–114. CrossRef
- National Cancer Institute, “Genetics of Breast and Ovarian Cancer (PDQ®),” 21 December 2012. [Online]. http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/HealthProfessional/page2/AllPages. [Accessed 22 February 2013].
- National Cancer Institute, “BRCA1 and BRCA2: Cancer Risk and Genetic Testing,” 29 May 2009. [Online].http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA#r6. [Accessed 22 February 2013].
- Campeau PM, Foulkes WD, Tischkowitz MD. New genetic developments, new therapeutic avenues. Hum Genet. 2008;124(1):31–42. CrossRef
- Liu Y, Diamant AL, Thind A, Maly RC. Validity of self-reports of breast cancer treatment in low-income, medically underserved women with breast cancer. Breast Cancer Res Treat. 2010;119(3):745–51. CrossRef
- Barisic A, Gelndon G, Weerasooriva N, Andrulis IL, Knight JA. Accuracy of self-reported breast cancer information among women from the Ontario site of the Breast Cancer Family Registry. J Cancer Epidemiol. 2012;2012:1–11. CrossRef
- Larouche G, Bouchard K, Chiquette J, Desbiens C, Simard J, Dorval M. Self-reported mammography use following BRCA1/2 genetic testing may be overestimated. Fam Cancer. 2011;11(1):27–32. CrossRef
- Phillips K, Milne RL, Buys S, Friedlander ML, Ward JH, McCredie MR, et al. Agreement between self-reported breast cancer treatment and medical records in a population-based breast cancer family registry. J Clin Oncol. 2005;23(21):4679–86. CrossRef
- Carpentier MY, Tiro JA, Savas SL, Bartholomew LK, Melhado TV, Coan SP, Argenbright KE, Vernon SW. Are cancer registries a viable tool for cancer survivor outreach? A feasibility study. J Cancer Surviv. 2013;7(1):155–63.
- Tisnado DM, Adams JL, Liu H, Damber CL, Chen WP, Hu FA, Carlisle DM, Mangione CM, Kahn KL. What is the concordance between the medical record and patient self-report as data sources for ambulatory care?. Med Care. 2006;44(2):132–40.
- Rauscher GH, Johnson TP, Cho YI, Walk JA. Accuracy of self-reported cancer-screening histories: a meta-analysis. Cancer Epidemiol Biomarkers Prev. 2008;17(4):748–57. CrossRef
- Cram P, Fendrick AM, Inadomi J, Cowen ME, Carpenter D, Vijan S. The impact of a celebrity promotional campaign on the use of colon cancer screening: The Katie Couric Effect. Arch Intern Med. 2003;163(13):1601–5. CrossRef
- Jolie A. My medical choice. Los Angeles: The New York Times: 2013. p. A25.
- Ruddy KJ, Gelber S, Shin J, Garber JE, Rosenberg R, Przypysny M, et al. Genetic testing in young women with breast cancer: results from a web-based survey. Ann Oncol. 2010;21(4):741–7. CrossRef
- Brown KL, Hutchison R, Zinberg RE, McGovern MM. Referral and experience with genetic testing among women with early onset breast cancer. Genet Test. 2005;9(4):301–5. CrossRef
- Baer HJ, Brawarsky P, Murray MF, Haas JS. Familial risk of cancer and knowledge and use of genetic testing. J Gen Intern Med. 2010;25(7):717–24. CrossRef
- Levy DE, Garber JE, Shields AE. Guidelines for genetic risk assessment of hereditary breast and ovarian cancer: early disagreements and low utilization. J Gen Intern Med. 2009;24(7):822–8. CrossRef
- Validity of self-reported genetic counseling and genetic testing use among breast cancer survivors
Journal of Cancer Survivorship
Volume 7, Issue 4 , pp 624-629
- Cover Date
- Print ISSN
- Online ISSN
- Springer US
- Additional Links
- Genetic counseling
- Genetic testing
- Electronic medical record
- Industry Sectors
- Author Affiliations
- 1. University of Texas Southwestern Medical Center and Harold C. Simmons Cancer Center, 5323 Harry Hines Blvd, Dallas, TX, 75390-9044, USA
- 2. University of Texas School of Public Health, Houston, TX, USA
- 3. Moncrief Cancer Institute, Fort Worth, TX, USA