Abstract
The aim of this paper is twofold: to analyze the genetic counseling process for breast cancer with a theoretical knowledge transfer lens and to compare generalists, medical specialists, and genetic counselors with regards to their genetic counseling practices. This paper presents the genetic counseling process occurring within a chain of value-adding activities of four main stages describing health professionals’ clinical practices: (1) evaluation, (2) investigation, (3) information, and (4) decision. It also presents the results of a cross-sectional study based on a Canadian medical doctors and genetic counselors survey (n = 176) realized between July 2012 and March 2013. The statistical exercise included descriptive statistics, one-way ANOVA and post-hoc tests. The results indicate that even though all types of health professionals are involved in the entire process of genetic counseling for breast cancer, genetic counselors are more involved in the evaluation of breast cancer risk, while medical doctors are more active in the decision toward breast cancer risk management strategies. The results secondly demonstrate the relevance and the key role of genetic counselors in the care provided to women at-risk of familial breast cancer. This paper presents an integrative framework to understand the current process of genetic counseling for breast cancer in Canada, and to shed light on how and where health professionals contribute to the process. It also offers a starting point for assessing clinical practices in genetic counseling in order to establish more clearly where and to what extent efforts should be undertaken to implement future genetic services.
Similar content being viewed by others
Notes
Abdominal and Breast Surgery; Advanced Gynecological Surgery; Breast Cancer; Breast Disease; Breast Oncology; Breast Pathology; Breast Surgery; Breast Surgical Oncology; Breasts; Cancer Genetics; Cancer Genetics Research; Cancer Medical Gynecology; Cancer/Head, Neck and Breast; Clinical Genetics; Clinical Oncology; Clinical Preventive Medicine; Counselling; Family and Marital Counselling; Gynecological Cancer; Gynecological Oncology; Gynecological Pathology; Gynecological Reproductive Endocrinology; Gynecological Surgery; Gynecology; Gynecology and Infertility; Gynecology Pathology and Cytology; Marital Counselling; Medical Genetics; Medical Oncology; Obstetrics and Gynecology; Oncology Imaging; Oncology/Breast Cancer; Ovarian Disorders; Reproductive Genetics; Reproductive Medicine; Surgical Oncology.
Breast Cancer; Breast Disease; Clinical Preventive Health; Clinical Preventive Medicine; General Surgery; Gynecological Oncology; Gynecology; Marital and Sexual Counselling; Medical Genetics; Medical Oncology; Obstetrics and Gynecology; Obstetrics and Gynecology; Oncology; Preventive Medicine; Surgical Oncology; Women’s Cancerus; Women’s Issues.
References
Jolie A (2013) My medical choice: The New York Times. The New York Times Compagnie, New York
Resta R, Biesecker BB, Bennett RL, Blum S, Estabrooks Hahn S, Strecker MN, Williams JL (2006) A new definition of genetic counseling: National society of genetic counselors’ task force report. J Genet Couns 15:77–83
Braithwaite D, Emery J, Walter F, Prevost AT, Sutton S (2004) Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis. J Natl Cancer Inst 96:122–133
Lobb EA, Butow PN, Meiser B, Barratt A, Gaff C, Young MA, Kirk J, Suthers GK, Tucker K (2002) Tailoring communication in consultations with women from high risk breast cancer families. Br J Cancer 87:502–508
Pieterse AH, Van Dulmen AM, Beemer FA, Bensing JM, Ausems MGEM (2007) Cancer genetic counseling: communication and counselees’ post-visit satisfaction, cognitions, anxiety, and needs fulfillment. J Genet Couns 16:85–96
Smets E, van Zwieten M, Michie S (2007) Comparing genetic counseling with non-genetic health care interactions: Two of a kind? Patient Educ Couns 68:223–225
McCann S, MacAuley D, Barnett Y (2005) Genetic consultations in primary care: Gps’ responses to three scenarios. Scand J Prim Health Care 23:109–114
Trivers KF, Baldwin LM, Miller JW, Matthews B, Andrilla CHA, Lishner DM, Goff BA (2011) Reported referral for genetic counseling or brca 1/2 testing among United States physicians: a vignette-based study. Cancer 117:5334–5343
Shields AE, Burke W, Levy DE (2008) Differential use of available genetic tests among primary care physicians in the united states: results of a national survey. Genet Med 10:404–414
Wham D, Vu T, Chan-Smutko G, Kobelka C, Urbauer D, Heald B (2010) Assessment of clinical practices among cancer genetic counselors. Fam Cancer 9:459–468
Sifri R, Myers R, Hyslop T, Turner B, Cocroft J, Rothermel T, Grana J, Schlackman N (2003) Use of cancer susceptibility testing among primary care physicians. Clin Genet 64:355–360
Burke W, Culver J, Pinsky L, Hall S, Reynolds SE, Yasui Y, Press N (2009) Genetic assessment of breast cancer risk in primary care practice. Am J Med Genet A 149A:349–356
Guerra CE, Sherman M, Armstrong K (2009) Diffusion of breast cancer risk assessment in primary care. J Am Board of Family Med JABFM 22:272–279
Haas JS, Kaplan CP, Gregorich SE, Perez-Stable EJ (2004) Des Jarlais G: Do physicians tailor their recommendations for breast cancer risk reduction based on patient’s risk? J Gen Intern Med 19:302–309
Freedman AN, Wideroff L, Olson L, Davis W, Klabunde C, Srinath KP, Reeve BB, Croyle RT, Ballard-Barbash R (2003) Us physicians’ attitudes toward genetic testing for cancer susceptibility. Am J Med Genet A 120A:63–71
Keating NL, Stoeckert KA, Regan MM, DiGianni L, Garber JE (2008) Physicians’ experiences with brca1/2 testing in community settings. J Clin Oncol 26:5789–5796
Van Riel E, Warlam-Rodenhuis CC, Verhoef S, Rutgers EJT, Ausems MGEM (2010) Brca testing of breast cancer patients: medical specialists’ referral patterns, knowledge and attitudes to genetic testing. Eur J Cancer Care 19:369–376
Khoury MJ, Gwinn M, Yoon PW, Dowling N, Moore CA, Bradley L (2007) The continuum of translation research in genomic medicine: How can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention? Genet Med 9:665–674
Han PKJ, Klabunde CN, Breen N, Yuan G, Grauman A, Davis WW, Taplin SH (2011) Multiple clinical practice guidelines for breast and cervical cancer screening: perceptions of us primary care physicians. Med Care 49:139–148
Forrest LE, Delatycki MB, Skene L, Aitken M (2007) Communicating genetic information in families—a review of guidelines and position papers. Eur J Hum Genet 15:612–618
Pieterse AH, Ausems M, Spreeuwenberg P, van Dulmen S (2011) Longer-term influence of breast cancer genetic counseling on cognitions and distress: smaller benefits for affected versus unaffected women. Patient Educ Couns 85:425–431
Howard AF, Balneaves LG, Bottorff JL (2009) Women’s decision making about risk-reducing strategies in the context of hereditary breast and ovarian cancer: a systematic review. J Genet Couns 18:578–597
Butow PN, Lobb EA (2004) Analyzing the process and content of genetic counseling in familial breast cancer consultations. J Genet Couns 13:403–424
Contegiacomo A, Pensabene M, Capuano I, Tauchmanova L, Federico M, Turchetti D, Cortesi L, Marchetti P, Ricevuto E, Cianci G (2004) An oncologist-based model of cancer genetic counselling for hereditary breast and ovarian cancer. Ann Oncol 15:726–732
Van Oostrom I, Tibben A (2004) A counselling model for brca1/2 genetic susceptibility testing. Hered Cancer Clin Pract 2:19–23
Ellington L, Roter D, Dudley WN, Baty BJ, Upchurch R, Larson S, Wylie JE, Smith KR, Botkin JR (2005) Communication analysis of brca1 genetic counseling. J Genet Couns 14:377–386
Bouchard L, Blancquaert I, Eisinger F, Foulkes WD, Evans G, Sobol H, Julian-Reynier C (2004) Prevention and genetic testing for breast cancer: variations in medical decisions. Soc Sci Med 58:1085–1096
Cho MK, Sankar P, Wolp PR, Godmilow L (1999) Commercialization of brca1/2 testing: practitioner awareness and use of a new genetic test. Am J Med Genet 83:157–163
Jbilou J, Halilem N, Blouin-Bougie J, Amara N, Landry R, Simard J (2014) Medical genetic counseling for breast cancer in primary care: a synthesis of major determinants of physicians’ practices in primary care settings. Public Health Genom 17(4):209–220
Jbilou J, Amara N, Landry R, Simard J (2011) Improving quality of genetic counseling for familial risk for breast cancer: a systematic review of the literature. In: 12th International Congress of Human Genetics/61st Annual Meeting of The American Society of Human Genetics, American Society of Human Genetics, Montreal, Canada
Holsapple CW, Singh M (2001) The knowledge chain model: activities for competitiveness. Expert Syst Appl 20:77–98
Landry R, Amara N (2012) Elucidation and enhancement of knowledge and technology transfer business models. VINE J Inf Knowl Manag Syst 42:94–116
Landry R, Amara N, Pablos-Mendes A, Shademani R, Gold I (2006) Knowledge translation-conceptual framework and approaches. Bull World Health Organ 84:597–602
Lee CC, Yang J (2000) Knowledge value chain. J Manag Dev 19:783–794
Lundquist G (2003) A rich vision of technology transfer: technology value management. J Technol Transf 28:265–284
Phan PH, Siegel DS (2006) The effectiveness of university technology transfer: lessons learned from quantitative and qualitative research in the U.S. and the U.K. rensselaer working papers in economics
Acton RT, Burst NM, Casebeer L, Ferguson SM, Greene P, Laird BL, Leviton L (2000) Knowledge, attitudes, and behaviors of alabama’s primary care physicians regarding cancer genetics. Acad Med 75:850–852
Fry A, Campbell H, Gudmunsdottir H, Rush R, Porteous M, Gorman D, Cull A (1999) Gps’ views on their role in cancer genetics services and current practice. Fam Pract 16:468–474
Gramling R, Nash J, Siren K, Eaton C, Culpepper L (2004) Family physician self-efficacy with screening for inherited cancer risk. AnnFamily Med 2:130–132
Gray RE, Chart P, Carroll JC, Fitch MI, Cloutier-Fisher D (1999) Family physicians’ perspectives on ovarian cancer. Cancer Prev Control 3:61–67
Hampel H, Grubs RE, Walton CS, Nguyen E, Breidenbach DH, Nettles S, Callana N, Corliss M, Fox S, Hiraki S, Ku L, Neufeld-Kaiser W, Riley B, Taylor J, Weik L (2009) Genetic counseling practice analysis. J Genet Couns 18:205–216
Lobb E, Butow P, Meiser B, Tucker K, Barratt A (2001) How do geneticists and genetic counselors counsel women from high-risk breast cancer families? J Genet Couns 10:185–199
Geller G, Bernhardt BA, Doksum T, Helzlsouer KJ, Wilcox P, Holtzman NA (1998) Decision-making about breast cancer susceptibility testing: How similar are the attitudes of physicians, nurse practitioners, and at-risk women? J Clin Oncol 16:2868–2876
Dunn AS, Shridharani KV, Lou W, Bernstein J, Horowizt CR (2001) Physician-patient discussions of controversial cancer screening tests. Am J Prev Med 20:130–134
Hodgson JM, Gillam LH, Sahhar MA, Metcalfe SA (2010) Testing times, challenging choices: An australian study of prenatal genetic counseling. J Genet Couns 19:22–37
Kalet A, Roberts JC, Fletcher R (1994) How do physicians talk with their patients about risks? J Gen Intern Med 9:402–404
Armstrong D, Michie S, Marteau T (1998) Revealed identity: a study of the process of genetic counselling. Soc Sci Med 47:1653–1658
Wood F, Prior L, Gray J (2003) Translations of risk: decision making in a cancer genetics service. Health Risk Soc 5:185–198
Gramling R, Clarke J, Simmons E (2009) Racial distribution of patient population and family physician endorsed importance of screening patients for inherited predisposition to cancer. J Health Care Poor Underserved 20:50–54
Freedman AN, Seminara D, Gail MH, Hartge P, Colditz GA, Ballard-Barbash R, Pfeiffer RM (2005) Cancer risk prediction models: a workshop on development, evaluation, and application. J Natl Cancer Inst 97:715–723
Henneman L, Marteau M, Timmermans RMD (2008) Clinical geneticists’ and genetic counselors’ views on the communication of genetic risks: a qualitative study. Patient Educ Couns 73:42–49
Edwards A, Elwyn G, Gwyn R (1999) General practice registrar responses to the use of different risk communication tools in simulated consultations: a focus group study. Br Med J 319:749–752
Visschers VHM, Meertens RM, Passchier WWF, de Vries NNK (2009) Probability information in risk communication: a review of the research literature. Risk Anal 29:267–287
Masny A, Daly M, Ross E, Balshem A, Gillespie D, Weil S (2003) A training course for oncology nurses in familial cancer risk assessment: evaluation of knowledge and practice. J Cancer Educ 18:20–25
Firth HV, Lindenbaum RH (1992) UK clinicians’ knowledge of and attitudes to the prenatal diagnosis of single gene disorders. J Med Genet 29:20–23
Mehnert A, Bergelt C, Koch U (2003) Knowledge and attitudes of gynecologists regarding genetic counseling for hereditary breast and ovarian cancer. Patient Educ Couns 49:183–188
Stockler M, Butow PN, Tattersall MHN (1993) The take-home message: doctors’ views on letters and tapes after a cancer consultation. Ann Oncol 4:549–552
Scott's Directories (2011) Canadian Medical Directory, MD Select. https://secure.scottsdirectories.com/
Gutmanis I, Beynon C, Tutty L, Wathen CN, MacMillan H (2007) Factors influencing identification of and response to intimate partner violence: a survey of physicians and nurses. BMC Public Health 7:12
Del Giudice ME, Grunfeld E, Harvey BJ, Piliotis E, Verma S (2009) Primary care physicians’ views of routine follow-up care of cancer survivors. J Clin Oncol 27:3338–3345
Pojskic N, MacKeigan L, Boon H, Ellison P, Breslin C (2011) Ontario family physician readiness to collaborate with community pharmacists on drug therapy management. Res Social Adm Pharm RSAP 7:39–50
Mathews M, Edwards AC, Rourke JT (2008) Retention of provisionally licensed international medical graduates: a historical cohort study of general and family physicians in newfoundland and labrador. Open Med 2:e62–e69
Perry JJ, Mansour M, Sharma M, Symington C, Brehaut J, Taljaard M, Stiell IG (2010) National survey of canadian neurologists’ current practice for transient ischemic attack and the need for a clinical decision rule. Stroke 41:987–991
McCahon D, Holder R, Metcalfe A, Clifford S, Gill P, Cole T, Sleightholme HV, Wilson S (2009) General practitioners’ attitudes to assessment of genetic risk of common disorders in routine primary care. Clin Genet 76:544–551
White DB, Bonham VL, Jenkins J, Stevens N, McBride CM (2008) Too many referrals of low-risk women for brca1/2 genetic services by family physicians. Cancer Epidemiol Biomark Prev 17:2980–2986
Klabunde CN, Willis GB, McLeod CC, Dillman DA, Johnson TP, Greene SM, Brown ML (2012) Improving the quality of surveys of physicians and medical groups a research agenda. Eval Health Prof 35:477–506
McLeod CC, Klabunde CN, Willis GB, Stark D (2013) Health care provider surveys in the United States, 2000–2010 a review. Eval Health Prof 36:106–126
Ahire SL, Devaray S (2001) An empirical comparison of statistical construct validation approaches. IEEE Trans Eng Manage 48:319–329
Grunfeld E, Levine MN, Julian JA, Coyle D, Szechtman B, Mirsky D, Verma S, Dent S, Sawka C, Pritchard KI, Ginsburg D, Wood M, Whelan T (2006) Randomized trial of long-term follow-up for early-stage breast cancer: a comparison of family physician versus specialist care. J Clin Oncol 24:848–855
De Bock GH, Bonnema J, Zwaan RE, Van De Velde CJH, Kievit J, Stiggelbout AM (2004) Patient’s needs and preferences in routine follow-up after treatment for breast cancer. Br J Cancer 90:1144–1150
Vig HS, Armstrong J, Egleston BL, Mazar C, Toscano M, Bradbury AR, Daly MB, Meropol NJ (2009) Cancer genetic risk assessment and referral patterns in primary care. Genet Test Mol Biomarkers 13:735–741
Bellcross C (2009) Approaches to applying breast cancer risk prediction models in clinical practice. Community Oncol 6:373–382
Amir E, Freedman OC, Seruga B, Evans DG (2010) Assessing women at high risk of breast cancer: a review of risk assessment models. J Natl Cancer Inst 102:680–691
Domchek SM, Eisen A, Calzone K, Stopfer J, Blackwood A, Weber BL (2003) Application of breast cancer risk prediction models in clinical practice. J Clin Oncol 21:593–601
Bellcross CA, Lemke AA, Pape LS, Tess AL, Meisner LT (2009) Evaluation of a breast/ovarian cancer genetics referral screening tool in a mammography population. Genet Med 11:783–789
Metcalfe KA, Kim-Sing C, Ghadirian P, Sun P, Narod SA (2014) Health care provider recommendations for reducing cancer risks among women with a brca1 or brca2 mutation. Clin Genet 85:21–30
Warner E, Heisey R, Carroll JC (2012) Primer: applying the 2011 canadian guidelines for breast cancer screening in practice. Can Med Assoc J 184:1803–1807
Rebbeck TR, Friebel T, Lynch HT, Neuhausen SL, van’t Veer L, Garber JE, Evans GR, Narod SA, Isaacs C, Matloff E, Daly MB, Olopade OI, Weber BL (2004) Bilateral prophylactic mastectomy reduces breast cancer risk in brca1 and brca2 mutation carriers: the prose study group. J Clin Oncol 22:1055–1062
McQuirter M, Castiglia LL, Loiselle CG, Wong N (2010) Decision-making process of women carrying a brca1 or brca2 mutation who have chosen prophylactic mastectomy. Oncol Nurs Forum 37:313–320
Kim-Sing C, Weir L, Kuusk U (2004) Breast cancer risk management for moderate-risk and high-risk women. Women 50:10
Web reference
Canadian Association of Genetic Counselors (CAGC) (2013) https://cagc-accg.ca/
Acknowledgments
This research was supported by the Canadian Institutes of Health Research as a part of the CIHR Team in Familial Risks of Breast Cancer Grant (CRN-8752–1) and the Ministry of Economic Development, Innovation and Export Trade of Quebec—Grant #PSR-SIIRI-701.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
None.
Rights and permissions
About this article
Cite this article
Amara, N., Blouin-Bougie, J., Jbilou, J. et al. The knowledge value-chain of genetic counseling for breast cancer: an empirical assessment of prediction and communication processes. Familial Cancer 15, 1–17 (2016). https://doi.org/10.1007/s10689-015-9835-7
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10689-015-9835-7