Background: Previous studies found genetic counseling increased participants' knowledge about hereditary breast and ovarian cancer (HBOC). However, most explored knowledge gain in unaffected women and the scale most commonly used does not include items that may be more pertinent to breast cancer (BC) survivors. Aims: To explore whether genetic counseling impacts BC survivors' knowledge about HBOC and BC survivor-specific information. Methods: The National Center for Human Genome Research Knowledge Scale and 5 additional items specific to BC survivors were tested among BC survivors; before genetic counseling (time 1), 2-3 weeks after genetic counseling (time 2), and 6 months following genetic counseling (time 3). Results: A statistically significant change in knowledge over time was found. Post hoc analyses revealed statistically significant increases in knowledge between time 1 (median = 7.00) and time 2 (median = 10.00; p < 0.005), and between time 1 and time 3 (median = 9.00; p < 0.005). Conclusion: Knowledge increased following genetic counseling, but the highest total average score at any time was <70% out of 100%. Additional analyses revealed items with low rates of correct response at all three time points, raising several concerns and the consideration of alternative approaches to measuring knowledge.

Keywords:
BRCA gene, Breast cancer survivor, Genetic counseling, Genetic testing, Hereditary breast and ovarian cancer, Knowledge
1.
Ellsworth RE, Decewicz DJ, Shriver CD, Ellsworth DL: Breast cancer in the personal genomics era. Curr Genomics 2010;11:146-161.
2.
Rhiem K, Engel C, Graeser M, Zachariae S, Kast K, Kiechle M, Ditsch N, Janni W, Mundhenke C, Golatta M, Varga D, Preisler-Adams S, Heinrich T, Bick U, Gadzicki D, Briest S, Meindl A, Schmutzler RK: The risk of contralateral breast cancer in patients from BRCA1/2 negative high risk families as compared to patients from BRCA1 or BRCA2 positive families: a retrospective cohort study. Breast Cancer Res 2012;14:R156.
3.
Gao X, Fisher SG, Emami B: Risk of second primary cancer in the contralateral breast in women treated for early-stage breast cancer: a population-based study. Int J Radiat Oncol Biol Phys 2003;56:1038-1045.
4.
Kauff ND, Mitra N, Robson ME, Hurley KE, Chuai S, Goldfrank D, Wadsworth E, Lee J, Cigler T, Borgen PI, Norton L, Barakat RR, Offit K: Risk of ovarian cancer in BRCA1 and BRCA2 mutation-negative hereditary breast cancer families. J Natl Cancer Inst 2005;97:1382-1384.
5.
Metcalfe KA, Lynch HT, Ghadirian P, Tung N, Olivotto IA, Foulkes WD, Warner E, Olopade O, Eisen A, Weber B, McLennan J, Sun P, Narod SA: The risk of ovarian cancer after breast cancer in BRCA1 and BRCA2 carriers. Gynecol Oncol 2005;96:222-226.
6.
Domchek SM, Friebel TM, Singer CF, Evans DG, Lynch HT, Isaacs C, Garber JE, Neuhausen SL, Matloff E, Eeles R: Association of risk-reducing surgery in BRCA1 or BRCA2 mutation carriers with cancer risk and mortality. JAMA 2010;304:967-975.
7.
Finch A, Beiner M, Lubinski J, Lynch HT, Moller P, Rosen B, Murphy J, Ghadirian P, Friedman E, Foulkes WD: Salpingo-oophorectomy and the risk of ovarian, fallopian tube, and peritoneal cancers in women with a BRCA1 or BRCA2 mutation. JAMA 2006;296:185-192.
8.
Gronwald J, Tung N, Foulkes WD, Offit K, Gershoni R, Daly M, Kim‐Sing C, Olsson H, Ainsworth P, Eisen A: Tamoxifen and contralateral breast cancer in BRCA1 and BRCA2 carriers: an update. Int J Cancer 2006;118:2281-2284.
9.
National Comprehensive Cancer Network: Hereditary Breast and/or Ovarian Cancer Syndrome Management, 2014. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp (accessed September 15, 2014).
10.
Khatcheressian JL, Hurley P, Bantug E, Esserman LJ, Grunfeld E, Halberg F, Hantel A, Henry NL, Muss HB, Smith TJ, Vogel VG, Wolff AC, Somerfield MR, Davidson NE: Breast cancer follow-up and management after primary treatment: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol 2013;31:961-965.
11.
Robson ME, Storm CD, Weitzel J, Wollins DS, Offit K: American Society of Clinical Oncology policy statement update: genetic and genomic testing for cancer susceptibility. J Clin Oncol 2010;28:893-901.
12.
Riley B, Culver J, Skrzynia C, Senter L, Peters J, Costalas J, Callif-Daley F, Grumet S, Hunt K, Nagy R, McKinnon W, Petrucelli N, Bennett R, Trepanier A: Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors. J Genet Couns 2012;21:151-161.
13.
Berliner J, Fay A, Cummings S, Burnett B, Tillmanns T: NSGC practice guideline: risk assessment and genetic counseling for hereditary breast and ovarian cancer. J Genet Couns 2013;22:155-163.
14.
Domchek SM, Nathanson KL: Panel testing for inherited susceptibility to breast, ovarian, and colorectal cancer. Genet Med 2014;16:827-829.
15.
Gage M, Wattendorf D, Henry L: Translational advances regarding hereditary breast cancer syndromes. J Surg Oncol 2012;105:444-451.
16.
Grann V, Patel P, Jacobson J, Warner E, Heitjan D, Ashby-Thompson M, Hershman D, Neugut A: Comparative effectiveness of screening and prevention strategies among BRCA1/2- affected mutation carriers. Breast Cancer Res Treat 2011;125:837-847.
17.
Braithwaite D, Emery J, Walter F, Prevost AT, Sutton S: Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis. J Natl Cancer Inst 2004;96:122-133.
18.
Shedlosky-Shoemaker R, Ngo TL, Ferketich AK, Porter K, Leventhal H, Kelly KM: Exploring perceptions of genetic testing: an examination of perceived accuracy over time. Patient Educ Couns 2010;78:34-39.
19.
Meiser B, Butow P, Barratt A, Gattas M, Gaff C, Hann E, Gleeson M, Dudding T, Tucker K: Risk perceptions and knowledge of breast cancer genetics in women at increased risk of developing hereditary breast cancer. Psychol Health 2001;16:297.
20.
Kelly K, Leventhal H, Marvin M, Toppmeyer D, Baran J, Schwalb M: Cancer genetics knowledge and beliefs and receipt of results in Ashkenazi Jewish individuals receiving counseling for BRCA1/2 mutations. Cancer Control 2004;11:236-244.
21.
Braithwaite D, Emery J, Walter F, Prevost AT, Sutton S: Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis. J Natl Cancer Inst 2004;96:122-133.
22.
Kelly K, Ellington L, Schoenberg N, Agarwal P, Jackson T, Dickinson S, Abraham J, Paskett ED, Leventhal H, Andrykowski M: Linking genetic counseling content to short-term outcomes in individuals at elevated breast cancer risk. J Genet Couns 2014;23:838-848.
23.
Randall J, Butow P, Kirk J, Tucker K: Psychological impact of genetic counselling and testing in women previously diagnosed with breast cancer. Intern Med J 2001;31:397-405.
24.
Lerman C, Biesecker B, Benkendorf JL, Kerner J, Gomez-Caminero A, Hughes C, Reed MM: Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J Natl Cancer Inst 1997;89:148-157.
25.
Lerman C, Narod S, Schulman K, Hughes C, Gomez-Caminero A, Bonney G, Gold K, Trock B, Main D, Lynch J, Fulmore C, Snyder C, Lemon SJ, Conway T, Tonin P, Lenoir G, Lynch H: BRCA1 testing in families with hereditary breast-ovarian cancer: a prospective study of patient decision making and outcomes. JAMA 1996;275:1885-1892.
26.
Christie J, Quinn GP, Malo T, Lee JH, Zhao XH, McIntyre J, Brzosowicz J, Jacobsen PB, Vadaparampil ST: Cognitive and psychological impact of BRCA genetic counseling in before and after definitive surgery breast cancer patients. Ann Surg Oncol 2012;19:4003-4011.
27.
Vadaparampil ST, Malo T, de la Cruz C, Christie J: Do breast cancer patients tested in the oncology care setting share BRCA mutation results with family members and health care providers? J Cancer Epidemiol 2012;2012:498062.
28.
Bernhardt BA, Biesecker BB, Mastromarino CL: Goals, benefits, and outcomes of genetic counseling: client and genetic counselor assessment. Am J Med Genet 2000;94:189-197.
29.
Biesecker BB: Goals of genetic counseling. Clin Genet 2001;60:323-330.
30.
Meiser B, Butow PN, Barratt AL, Schnieden V, Gattas M, Kirk J, Gaff C, Suthers G, Tucker K: Long-term outcomes of genetic counseling in women at increased risk of developing hereditary breast cancer. Patient Educ Couns 2001;44:215-225.
31.
Brain K, Gray J, Norman P, France E, Anglim C, Barton G, Parsons E, Clarke A, Sweetland H, Tischkowitz M: Randomized trial of a specialist genetic assessment service for familial breast cancer. J Natl Cancer Inst 2000;92:1345-1351.
32.
Marteau TM, Dormandy E, Michie S: A measure of informed choice. Health Expect 2001;4:99-108.
33.
Godard B, Hurlimann T, Letendre M, Egalite N: Guidelines for disclosing genetic information to family members: from development to use. Fam Cancer 2006;5:103-116.
34.
Chivers Seymour K, Addington-Hall J, Lucassen A, Foster C: What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research. J Genet Counsel 2010;19:330-342.
35.
Meiser B, Irle J, Lobb E, Barlow-Stewart K: Assessment of the content and process of genetic counseling: a critical review of empirical studies. J Genet Counsel 2008;17:434-451.
36.
Kessler S: Psychological aspects of genetic counseling. IX. Teaching and counseling. J Genet Counsel 1997;6:287-295.
37.
Biesecker BB, Peters KF: Process studies in genetic counseling: peering into the black box. Am J Med Genet 2001;106:191-198.
38.
Smerecnik CM, Mesters I, Verweij E, de Vries NK, de Vries H: A systematic review of the impact of genetic counseling on risk perception accuracy. J Genet Counsel 2009;18:217-228.
39.
Hamilton JG, Lobel M, Moyer A: Emotional distress following genetic testing for hereditary breast and ovarian cancer: a meta-analytic review. Health Psychol 2009;28:510.
40.
Ondrusek N, Warner E, Goel V: Development of a knowledge scale about breast cancer and heredity (BCHK). Breast Cancer Res Treat 1999;53:69-75.
© 2015 S. Karger AG, Basel
2015
Copyright / Drug Dosage / Disclaimer
Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.
You do not currently have access to this content.