Barriers in identification and referral to genetic counseling for familial cancer risk: The perspective of genetic service providers

Journal of Genetic Counseling

Volumn 20, Issue 3, 2011, Pages 314-322

  Rolnick, Sharon J ^a   Rahm, Alanna K ^b   Jackson, Jody M ^a   Nekhlyudov, Larissa ^c,d   Goddard, Katrina A B ^e   Field, Terry ^f   McCarty, Catherine ^g   Nakasato, Cynthia ^b   Roblin, Douglas ^h   Anderson, Christopher P ^a   Valdez, Rodolfo ⁱ  

^a HEALTHPARTNERS RESEARCH FOUNDATION   (United States)

^b KAISER PERMANENTE   (United States)

^c HARVARD MEDICAL SCHOOL   (United States)

^d HARVARD VANGUARD MEDICAL ASSOCIATES   (United States)

^e CENTER FOR HEALTH RESEARCH   (United States)

^f UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL   (United States)

^g MARSHFIELD CLINIC   (United States)

^h KAISER PERMANENTE   (United States)

ⁱ NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES   (United States)

Author keywords

Genetic counseling; Genetic predisposition to disease; Genetic screening; Neoplasms; Referral and consultation

Indexed keywords

ARTICLE; AWARENESS; FEMALE; GENETIC COUNSELING; GENETIC PREDISPOSITION; GENETICS; HUMAN; MALE; NEOPLASM; PATIENT ATTITUDE; PATIENT REFERRAL; PSYCHOLOGICAL ASPECT;

AWARENESS; FEMALE; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; HUMANS; MALE; NEOPLASMS; PATIENT ACCEPTANCE OF HEALTH CARE; REFERRAL AND CONSULTATION;

EID: 79958716807     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-011-9351-3     Document Type: Article

References (53)

1. (2009a). Colon Cancer. NCNN clinical practice guidelines in oncology (NCCN Guidelines™) Retrieved March 3, 2009, from www.nccn.org.
2. (2009b). Recommendations from the EGAPP Working Group: genetic testing strategies in newly diagnosed individuals with colorectal cancer aimed at reducing morbidity and mortality from Lynch syndrome in relatives. Genetics in Medicine, 11, 35-41
3. Allegra, C. J., Jessup, J. M., Somerfield, M. R., Hamilton, S. R., Hammond, E. H., Hayes, D. F., et al. (2009). American Society of Clinical Oncology provisional clinical opinion: testing for KRAS gene mutations in patients with metastatic colorectal carcinoma to predict response to anti-epidermal growth factor receptor monoclonal antibody therapy. Journal of Clinical Oncology, 27, 2091-2096.
4. American Cancer Society. (2006). Minnesota cancer facts and figures 2006. Mendota Heights, American Cancer Society, Midwest Division.
5. American Society of Clinical Oncology. (2003). American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility. Journal of Clinical Oncology, 21, 2397-2406.
6. Armstrong, K., Calzone, K., Stopfer, J., Fitzgerald, G., Coyne, J., & Weber, B. (2000). Factors associated with decisions about clinical BRCA1/2 testing. Cancer Epidemiol Biomarkers Prev, 9, 1251-1254.
7. Berg, A. O., Baird, M. A., Botkin, J. R., Driscoll, D. A., Fishman, P. A., Guarino, P. D., et al. (2009). National institutes of health state-of-the-science conference statement: family history and improving health. Annals of Internal Medicine, 151, 872-877.
8. Brierley, K. L., Campfield, D., Dohany, L., Donenberg, T., Ducaine, W., Matloff, E. T., et al. (2010). Errors in delivery of cancer genetics services: Implications for pactice. Connecticut Medicine, 74, 413-423.
9. Brooks, L., Lennard, F., Shenton, A., Lalloo, F., Ambus, I., Ardern-Jones, A., et al. (2004). BRCA1/2 predictive testing: a study of uptake in two centres. European Journal of Human Genetics, 12, 654-662. (Pubitemid 39172427)
10. Calzone, K. A., Prindiville, S. A., Jourkiv, O., Jenkins, J., DeCarvalho, M., Wallerstedt, D. B., et al. (2005). Randomized comparison of group versus individual genetic education and counseling for familial breast and/or ovarian cancer. Journal of Clinical Oncology, 23, 3455-3464.
11. Facio, F. M., Feero, W. G., Linn, A., Oden, N., Manickam, K., & Biesecker, L. G. (2010). Validation of my family health portrait for six common heritable conditions. Genetics in Medicine, 12, 370-375.
12. Flynn, B. S., Wood, M. E., Ashikaga, T., Stockdale, A., Dana, G. S., & Naud, S. (2010). Primary care physicians' use of family history for cancer risk assessment. BMC Family Practice, 11, 45.
13. Frezzo, T. M., Rubinstein, W. S., Dunham, D., & Ormond, K. E. (2003). The genetic family history as a risk assessment tool in internal medicine. Genetics in Medicine, 5, 84-91. (Pubitemid 36992617)
14. Geer, K. P., Ropka, M. E., Cohn, W. F., Jones, S. M., & Miesfeldt, S. (2001). Factors influencing patients' decisions to decline cancer genetic counseling services. Journal of Genetic Counseling, 10, 25-40. (Pubitemid 33635905)
15. Guerra, C. E., Sherman, M., & Armstrong, K. (2009). Diffusion of breast cancer risk assessment in primary care. Journal of the American Board of Family Medicine, 22, 272-279.
16. Guttmacher, A. E., Collins, F. S., & Carmona, R. H. (2004). The family history - more important than ever. The New England Journal of Medicine, 351, 2333-2336. (Pubitemid 39552752)
17. Johnson, B. M. (2007). Personal communication - unpublished data based on a health plan examination of family history data
18. Julian-Reynier, C., Sobol, H., Sevilla, C., Nogues, C., & Bourret, P. (2000). Uptake of hereditary breast/ovarian cancer genetic testing in a French national sample of BRCA1 families. The French Cancer Genetic Network. Psychooncology, 9, 504-510.
19. Khoury, M. J. (2003). Genetics and genomics in practice: the continuum from genetic disease to genetic information in health and disease. Genetics in Medicine, 5, 261-268.
20. Khoury, M. J., Gwinn, M., Yoon, P. W., Dowling, N., Moore, C. A., & 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? Genetics in Medicine, 9, 665-674.
21. Khoury, M. J., Feero, W. G., & Valdez, R. (2010). Family history and personal genomics as tools for improving health in an era of evidence-based medicine. American Journal of Preventive Medicine, 39, 184-188.
22. Lerman, C., Biesecker, B., Benkendorf, J. L., Kerner, J., Gomez-Caminero, A., Hughes, C., et al. (1997). Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. Journal of the National Cancer Institute, 89, 148-157. (Pubitemid 27034791)
23. Matloff, E., & Caplan, A. (2008). Direct to confusion: lessons learned from marketing BRCA testing. The American Journal of Bioethics, 8, 5-8.
24. Meiser, B., Butow, P. N., Barratt, A. L., Schnieden, V., Gattas, M., Kirk, J., et al. (2001). Long-term outcomes of genetic counseling in women at increased risk of developing hereditary breast cancer. Patient Education and Counseling, 44, 215-225. (Pubitemid 32842862)
25. Morgan, D. L. (1988). Focus groups and qualitative research. Newberry Park: Sage.
26. Mouchawar, J., Klein, C. E., & Mullineaux, L. (2001). Colorado family physicians' knowledge of hereditary breast cancer and related practice. Journal of Cancer Education, 16, 33-37. (Pubitemid 32230506)
27. Murff, H. J., Spigel, D. R., & Syngal, S. (2004). Does this patient have a family history of cancer? An evidence-based analysis of the accuracy of family cancer history. Jama, 292, 1480-1489. (Pubitemid 39258342)
28. Office of the Surgeon General. (2009a). Surgeon General's family health history initiative. Retrieved November 19, 2009, from http://www.hhs.gov/ familyhistory/.
29. Office of the Surgeon General. (2009b). Surgeon General's new family health history tool is released, ready for "21st century medicine". Retrieved September 10, 2009, from http://www.hhs.gov/news/press/2009pres/01/ 20090113a.html.
30. O'Neill, S. M., Peters, J. A., Vogel, V. G., Feingold, E., & Rubinstein, W. S. (2006). Referral to cancer genetic counseling: are there stages of readiness? American Journal of Medical Genetics. Part C: Seminars in Medical Genetics, 142C, 221-231.
31. Oregon Evidence-based Practice Center and U.S. Preventive Services Task Force. (2005). Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: Evidence Synthesis. Number 37. Retrieved August 11, 2009, from http://www.ahrq.gov/Clinic/uspstf/uspsbrgen.htm.
32. Pieterse, A. H., van Dulmen, A. M., Ausems, M. G., Beemer, F. A., & Bensing, J. M. (2005). Communication in cancer genetic counselling: does it reflect counselees' previsit needs and preferences? British Journal of Cancer, 92, 1671-1678.
33. Qureshi, N., Carroll, J. C., Wilson, B., Santaguida, P., Allanson, J., Brouwers, M., et al. (2009). The current state of cancer family history collection tools in primary care: a systematic review. Genetics in Medicine, 11, 495-506.
34. Rahm, A. K., Sukhanova, A., Ellis, J., & Mouchawar, J. (2007). Increasing utilization of cancer genetic counseling services using a patient navigator model. Journal of Genetic Counseling, 16, 171-177. (Pubitemid 46355034)
35. Ramsey, S. D., Burke, W., Pinsky, L., Clarke, L., Newcomb, P., & Khoury, M. J. (2005). Family history assessment to detect increased risk for colorectal cancer: conceptual considerations and a preliminary economic analysis. Cancer Epidemiol Biomarkers Prev, 14, 2494-2500. (Pubitemid 41754506)
36. Ramsey, S. D., Yoon, P., Moonesinghe, R., & Khoury, M. J. (2006). Population-based study of the prevalence of family history of cancer: implications for cancer screening and prevention. Genetics in Medicine, 8, 571-575. (Pubitemid 44402034)
37. Reid, G. T., Walter, F. M., Brisbane, J. M., & Emery, J. D. (2009). Family history questionnaires designed for clinical use: a systematic review. Public Health Genomics, 12, 73-83.
38. SAS Institute. (2006). Base SAS 9.1.3 procedures guide. Cary: SAS Institute, Inc.
39. Scheuner, M. T., de Vries, H., Kim, B., Meili, R. C., Olmstead, S. H., & Teleki, S. (2009). Are electronic health records ready for genomic medicine? Genetics in Medicine, 11, 510-517.
40. Schlich-Bakker, K. J., ten Kroode, H. F., Warlam-Rodenhuis, C. C., van den Bout, J., & Ausems, M. G. (2007). Barriers to participating in genetic counseling and BRCA testing during primary treatment for breast cancer. Genetics in Medicine, 9, 766-777.
41. Silverman, D. (1993). Interpreting qualitative data: Methods for analysing talk, text and interaction. London: Sage.
42. Simon, C., Acheson, L., Burant, C., Gerson, N., Schramm, S., Lewis, S., et al. (2008). Patient interest in recording family histories of cancer via the Internet. Genetics in Medicine, 10, 895-902.
43. Smith, R. A., Cokkinides, V., & Eyre, H. J. (2007). Cancer screening in the United States, 2007: a review of current guidelines, practices, and prospects. CA: A Cancer Journal for Clinicians, 57, 90-104. (Pubitemid 46535709)
44. Sussner, K. M., Jandorf, L., Thompson, H. S., & Valdimarsdottir, H. B. (2010). Interest and beliefs about BRCA genetic counseling among at-risk Latinas in New York City. Journal of Genetic Counseling, 19, 255-268.
45. Suther, S., & Goodson, P. (2003). Barriers to the provision of genetic services by primary care physicians: a systematic review of the literature. Genetics in Medicine, 5, 70-76. (Pubitemid 36992615)
46. Trepanier, A., Ahrens, M., McKinnon, W., Peters, J., Stopfer, J., Grumet, S. C., et al. (2004). Genetic cancer risk assessment and counseling: recommendations of the national society of genetic counselors. Journal of Genetic Counseling, 13, 83-114. (Pubitemid 39024176)
47. Valdez, R., Yoon, P. W., Qureshi, N., Green, R. F., & Khoury, M. J. (2010). Family history in public health practice: a genomic tool for disease prevention and health promotion. Annual Review of Public Health, 31, 69-87. 61 p following 87.
48. Volk, L. A., Staroselsky, M., Newmark, L. P., Pham, H., Tumolo, A., Williams, D. H., et al. (2007). Do physicians take action on high risk family history information provided by patients outside of a clinic visit? Studies in Health Technology and Informatics, 129(Pt 1), 13-17.
49. Wagner, E. H., Greene, S. M., Hart, G., Field, T. S., Fletcher, S., Geiger, A. M., et al. (2005). Building a research consortium of large health systems: the Cancer Research Network. Journal of the National Cancer Institute Monographs, 3-11
50. Wideroff, L., Freedman, A. N., Olson, L., Klabunde, C. N., Davis, W., Srinath, K. P., et al. (2003). Physician use of genetic testing for cancer susceptibility: results of a national survey. Cancer Epidemiol Biomarkers Prev, 12, 295-303. (Pubitemid 36427989)
51. Wideroff, L., Vadaparampil, S. T., Greene, M. H., Taplin, S., Olson, L., & Freedman, A. N. (2005). Hereditary breast/ovarian and colorectal cancer genetics knowledge in a national sample of US physicians. Journal of Medical Genetics, 42, 749-755. (Pubitemid 41475249)
52. Wilson, B. J., Qureshi, N., Santaguida, P., Little, J., Carroll, J. C., Allanson, J., et al. (2009). Systematic review: family history in risk assessment for common diseases. Annals of Internal Medicine, 151, 878-885.
53. Wood, M. E., Stockdale, A., & Flynn, B. S. (2008). Interviews with primary care physicians regarding taking and interpreting the cancer family history. Family Practice, 25, 334-340.