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Models of Service Delivery for Cancer Genetic Risk Assessment and Counseling

  • Original Paper
  • Published:
Journal of Genetic Counseling

Abstract

Increasing awareness of and the potentially concomitant increasing demand for cancer genetic services is driving the need to explore more efficient models of service delivery. The aims of this study were to determine which service delivery models are most commonly used by genetic counselors, assess how often they are used, compare the efficiency of each model as well as impact on access to services, and investigate the perceived benefits and barriers of each. Full members of the NSGC Familial Cancer Special Interest Group who subscribe to its listserv were invited to participate in a web-based survey. Eligible respondents were asked which of ten defined service delivery models they use and specific questions related to aspects of model use. One-hundred ninety-two of the approximately 450 members of the listserv responded (42.7 %); 177 (92.2 %) had provided clinical service in the last year and were eligible to complete all sections of the survey. The four direct care models most commonly used were the (traditional) face-to-face pre- and post-test model (92.2 %), the face-to-face pretest without face-to-face post-test model (86.5 %), the post-test counseling only for complex results model (36.2 %), and the post test counseling for all results model (18.3 %). Those using the face-to-face pretest only, post-test all, and post-test complex models reported seeing more new patients than when they used the traditional model and these differences were statistically significantly. There were no significant differences in appointment wait times or distances traveled by patients when comparing use of the traditional model to the other three models. Respondents recognize that a benefit of using alternative service delivery models is increased access to services; however, some are concerned that this may affect quality of care.

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References

  • Allain, D. C., Baker, M., Blazer, K. R., Cohen, S. A., Copeland, K., Djurdjinovic, L., et al. (2010). Evolving models of cancer risk genetic counseling. Perspect Genet Couns, 32(2), 13–17.

    Google Scholar 

  • American College of Medical Genetics. (1999). Genetic susceptibility to breast and ovarian cancer: Assessment, counseling and testing guidelines. Bethesda (MD). Available at: http://www.ncbi.nlm.nih.gov/books/NBK56955/. Last accessed 7/15/13.

  • Association of Community Cancer Centers. (2012). Cancer Program Guidelines. Available at: http://www.accc-cancer.org/publications/pdf/cancerprogramguidelines.pdf. Last accessed 5/16/13.

  • Baumanis, L., Evans, J. P., Callanan, N., & Susswein, L. R. (2009). Telephoned BRCA1/2 genetic test results: prevalence, practice, and patient satisfaction. Journal of Genetic Counseling, 18(5), 447–463. doi:10.1007/s10897-009-9238-8.

    Article  CAS  PubMed  Google Scholar 

  • Beene-Harris, R. Y., Wang, C., & Bach, J. V. (2007). Barriers to access: results from focus groups to identify genetic service needs in the community. Community Genetics, 10(1), 10–18. doi:10.1159/000096275.

    Article  PubMed  Google Scholar 

  • Bellcross, C. A., Kolor, K., Goddard, K. A., Coates, R. J., Reyes, M., & Khoury, M. J. (2011). Awareness and utilization of BRCA1/2 testing among U.S. primary care physicians. American Journal of Preventive Medicine, 40(1), 61–66. doi:10.1016/j.amepre.2010.09.027.

    Article  PubMed  Google Scholar 

  • Bensend, T. A., McCarthy Veach, P., & Niendorf, K. B. (2013). What’s the harm? Genetic counselor perceptionsof adverse effects of genetic service provision by non-genetics professionals. J Genet Counsel. doi:10.1007/s10897-013-9605-3 [Epub ahead of print].

    Google Scholar 

  • Berliner, J. L., & Fay, A. M. (2007). Risk assessment and genetic counseling for hereditary breast and ovarian cancer: recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling, 16(3), 241–260. doi:10.1007/s10897-012-9547-1.

    Article  PubMed  Google Scholar 

  • Biesecker, B. B., Boehnke, M., Calzone, K., Markel, D. S., Garber, J. E., Collins, F. S., et al. (1993). Genetic counseling for families with inherited susceptibility to breast and ovarian cancer. Journal of the American Medical Association, 269(15), 1970–1974. doi:10.1001/jama.1993.03500150082032.

    Article  CAS  PubMed  Google Scholar 

  • Brierley, K. L., Campfield, D., Ducaine, W., Dohany, L., Donenberg, T., Shannon, K., et al. (2010). Errors in delivery of cancer genetics services: implications for practice. Connecticut Medicine, 74(7), 413–423.

    PubMed  Google Scholar 

  • 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(15), 3455–3464. doi:10.1200/JCO.2005.04.050.

    Article  PubMed  Google Scholar 

  • Chen, W. Y., Garber, J. E., Higham, S., Schneider, K. A., Davis, K. B., Deffenbaugh, A. M., et al. (2002). BRCA1/2 genetic testing in the community setting. Journal of Clinical Oncology, 20(22), 4485–4492. doi:10.1200/JCO.2002.08.147.

    Article  PubMed  Google Scholar 

  • Cohen, S. A., Gustafson, S. L., Marvin, M. L., Riley, B. D., Uhlmann, W. R., Liebers, S. B., et al. (2012). Report from the national society of genetic counselors service delivery model task force: a proposal to define models, components, and modes of referral. Journal of Genetic Counseling, 21(5), 645–651. doi:10.1007/s10897-012-9505-y.

    Article  PubMed  Google Scholar 

  • Cohen, S. A., Marvin, M. L., Riley, B. D., Vig, H. S., Rousseau, J. A., & Gustafson, S. L. (2013). Identification of genetic counseling service delivery models in practice: a report from the NSGC Service Delivery Model Task Force. Journal of Genetic Counseling, 22, 411–421. doi:10.1007/s10897-013-9588-0.

    Article  PubMed  Google Scholar 

  • Cohen, S. A., McIlvried, D., & Schnieders, J. (2009). A collaborative approach to genetic testing: a community hospital’s experience. Journal of Genetic Counseling, 18(6), 530–533. doi:10.1007/s10897-009-9243-y.

    Article  PubMed  Google Scholar 

  • Culver, J. O., Bowen, D. J., Reynolds, S. E., Pinsky, L. E., Press, N., & Burke, W. (2009). Breast cancer risk communication: assessment of primary care physicians by standardized patients. Genetics in Medicine, 11(10), 735–741. doi:10.1097/GIM.0b013e3181b2e5eb.

    Article  PubMed  Google Scholar 

  • Eeles, R., Purland, G., Maher, J., & Evans, D. G. (2007). Delivering cancer genetics services–new ways of working. Familial Cancer, 6(2), 163–167. doi:10.1007/s10689-007-9137-9.

    Article  PubMed  Google Scholar 

  • EGAPP Working Group. (2009). 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(1), 35–41. doi:10.1097/GIM.0b013e31818fa2ff.

    Google Scholar 

  • Freedman, A. N., Wideroff, L., Olson, L., Davis, W., Klabunde, C., Srinath, K. P., et al. (2003). US physicians’ attitudes toward genetic testing for cancer susceptibility. American Journal of Medical Genetics Part A, 120A(1), 63–71. doi:10.1002/ajmg.a.10192.

    Article  CAS  PubMed  Google Scholar 

  • Giardiello, F. M., Brensinger, J. D., Petersen, G. M., Luce, M. C., Hylind, L. M., Bacon, J. A., et al. (1997). The use and interpretation of commercial APC gene testing for familial adenomatous polyposis. The New England Journal of Medicine, 336(12), 823–827. doi:10.1056/nejm199703203361202.

    Article  CAS  PubMed  Google Scholar 

  • Hilgart, J. S., Hayward, J. A., Coles, B., & Iredale, R. (2012a). Telegenetics: a systematic review of telemedicine in genetics services. Genetics in Medicine, 14(9), 765–776. doi:10.1038/gim.2012.40.

    Article  Google Scholar 

  • Hilgart, J. S., Hayward, J. A., & Iredale, R. (2012b). E-genetics: exploring the acceptability and feasibility of using technology in cancer genetics services. Clinical Genetics, 81(6), 514–520. doi:10.111/j.1399-0004.2011.01813.x.

    Article  CAS  PubMed  Google Scholar 

  • Hoskins, K. F., Stopfer, J. E., Calzone, K. A., Merajver, S. D., Rebbeck, T. R., Garber, J. E., et al. (1995). Assessment and counseling for women with a family history of breast cancer. A guide for clinicians. Journal of the American Medical Association, 273(7), 577–585. doi:10.1001/jama.1995.03520310075033.

    Article  CAS  PubMed  Google Scholar 

  • IBM Corp. (Released 2010). IBM SPSS Statistics for Windows, Version 19.0. Armonk, NY: IBM Corp.

  • IOM (Institute of Medicine. (2009). Innovations in service delivery in the age of genomics: Workshop summary. Washington DC: The National Academies Press.

    Google Scholar 

  • International Huntington Association the World Federation of Neurology Research Group on Huntington’s Chorea. (1994). Guidelines for the molecular genetics predictive test in Huntington’s disease. Journal of Medical Genetics, 31(7), 555–559.

    Article  Google Scholar 

  • Iredale, R., Elwyn, G., Edwards, A., & Gray, J. (2007). Attitudes of genetic clinicians in Wales to the future development of cancer genetics services. Journal of Evaluation in Clinical Practice, 13(1), 86–89. doi:10.1111/j.1365-2753.2006.00657.x.

    Article  PubMed  Google Scholar 

  • Jenkins, J., Calzone, K. A., Dimond, E., Liewehr, D. J., Steinberg, S. M., Jourkiv, O., et al. (2007). Randomized comparison of phone versus in-person BRCA1/2 predisposition genetic test result disclosure counseling. Genetics in Medicine, 9(8), 487–495. doi:10.1097/GIM.0b013e31812e6220.

    Article  PubMed  Google Scholar 

  • Mehnert, A., Bergelt, C., & Koch, U. (2003). Knowledge and attitudes of gynecologists regarding genetic counseling for hereditary breast and ovarian cancer. Patient Education and Counseling, 49(2), 183–188. doi:10.1016/S0738-3991(02)00117-9#doilink.

    Article  PubMed  Google Scholar 

  • Mouchawar, J., Hensley-Alford, S., Laurion, S., Ellis, J., Kulchak-Rahm, A., Finucane, M. L., et al. (2005). Impact of direct-to-consumer advertising for hereditary breast cancer testing on genetic services at a managed care organization: a naturally-occurring experiment. Genet Medicine, 7(3), 191–197. doi: 10.109701.gim.0000156526.16967.7A

    Google Scholar 

  • National Society of Genetic Counselorsa (2010). Professional status survey- Work environment report. Available at: www.nsgc.org/MemberCenter/LeadershipCenter/tabid/190/Default.aspx?EntryId=286. Last accessed 5/16/13.

  • National Society of Genetic Counselorsb (2010). Professional status survey-Cancer. Available at www.nsgc.org/MemberCenter/LeadershipCenter/tabid/190/Default.aspx?EntryId=455. Last accessed 5/16/13.

  • Nelson, H. D., Huffman, L. H., Fu, R., & Harris, E. L. (2005). Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: systematic evidence review for the U.S. Preventive Services Task Force. Annals of Internal Medicine, 143, 362–379. doi:10.7326/0003-4819-143-5-200509060-00012.

    Article  CAS  PubMed  Google Scholar 

  • Pal T., Lee J-H., Besharat A., Thompson Z.,Monteiro A.N.A, Phelan C., et al. (2013). Modes of delivery of genetic testing services and the uptake of cancer risk management strategies in BRCA1 and BRCA2 carriers. Clinical Genetics, 1–5. doi:10.1111/cge.12130.

  • Peshkin, B. N., Demarco, T. A., Graves, K. D., Brown, K., Nusbaum, R. H., Moglia, D., et al. (2008). Telephone genetic counseling for high-risk women undergoing BRCA1 and BRCA2 testing: rationale and development of a randomized controlled trial. Genetic Testing, 12(1), 37–52. doi:10.1089/gte.2006.0525.

    Article  PubMed  Google Scholar 

  • Prochniak, C. F., Martin, L. J., Miller, E. M., & Knapke, S. C. (2012). Barriers to and motivations for physician referral of patients to cancer genetics clinics. Journal of Genetic Counseling, 21(2), 305–325. doi:10.1007/s10897-011-9401-x.

    Article  PubMed  Google Scholar 

  • Ridge, Y., Panabaker, K., McCullum, M., Portigal-Todd, C., Scott, J., & McGillivray, B. (2009). Evaluation of group genetic counseling for hereditary breast and ovarian cancer. Journal of Genetic Counseling, 18(1), 87–100. doi:10.1007/s10897-008-9189-5.

    Article  PubMed  Google Scholar 

  • Riley, B. D., Culver, J. O., Skrzynia, C., Senter, L. A., Peters, J. A., Costalas, J. W., et al. (2012). Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling, 21(2), 151–161. doi:10.1007/s10897-011-9462-x.

    Article  PubMed  Google Scholar 

  • Rolnick, S. J., Rahm, A. K., Jackson, J. M., Nekhlyudov, L., Goddard, K. A., Field, T., et al. (2011). Barriers in identification and referral to genetic counseling for familial cancer risk: The perspective of genetic services providers. Journal of Genetic Counseling, 20(3), 314–322. doi:10.1007/s10897-011-9351-3.

    Article  PubMed  Google Scholar 

  • Rothwell, E., Kohlmann, W., Jasperson, K., Gammon, A., Wong, B., & Kinney, A. (2012). Patient outcomes associated with group and individual genetic counseling formats. Familial Cancer, 11(1), 97–106. doi:10.1007/s10689-011-9486-2.

    Article  PubMed  Google Scholar 

  • Shanley, S., Myhill, K., Doherty, R., Ardern-Jones, A., Hall, S., Vince, C., et al. (2007). Delivery of cancer genetics services: the Royal Marsden telephone clinic model. Familial Cancer, 6(2), 213–219. doi:10.1007/s10689-007-9131-2.

    Article  CAS  PubMed  Google Scholar 

  • Sifri, R., Myers, R., Hyslop, T., Turner, B., Cocroft, J., Rothermel, T., et al. (2003). Use of cancer susceptibility testing among primary care physicians. Clinical Genetics, 64(4), 355–360. doi:10.1034/j.1399-0004.2003.00131.x.

    Article  CAS  PubMed  Google Scholar 

  • 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(2), 83–114. doi:10.1023/b:jogc.0000018821.48330.77.

    Article  PubMed  Google Scholar 

  • U.S. Department of Health and Human Services. (2011) . Office of Disease Prevention and Health Promotion. Healthy People 2020. Washington, DC. Available at www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=1. Last accessed 7/9/13.

  • Wham, D., Vu, T., Chan-Smutko, G., Kobelka, C., Urbauer, D., & Heald, B. (2010). Assessment of clinical practices among cancer genetic counselors. Familial Cancer, 9(3), 459–468. doi:10.1007/s10689-010-9326-9.

    Article  PubMed  Google Scholar 

  • 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 Epidemiology, Biomarkers and Prevention, 12(4), 295–303.

    PubMed  Google Scholar 

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Acknowledgments

We would like to acknowledge Stephanie A. Cohen, MS, CGC, Genetic Counselor, St. Vincent Hospital, Indianapolis, IN for her significant contributions to study design and survey development. We would also like to thank the members of the National Society of Genetic Counselors’ Service Delivery Model Task Force and Cancer SIG who piloted the draft survey. Another acknowledgement goes out to Rachel Orlowski, MS, from the Wayne State University Center for Urban Studies for her assistance with the statistical analyses performed on the data set. Finally, we would like to thank all the members of the Cancer SIG who completed the survey.

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  1. Center for Molecular Medicine and Genetics, Wayne State University, 540 E. Canfield Street, 2375 Scott Hall, Detroit, MI, 48201, USA

    Angela M. Trepanier

  2. Division of Human Genetics, The Ohio State University, Columbus, OH, USA

    Dawn C. Allain

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  1. Angela M. Trepanier
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  2. Dawn C. Allain
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Correspondence to Angela M. Trepanier.

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Trepanier, A.M., Allain, D.C. Models of Service Delivery for Cancer Genetic Risk Assessment and Counseling. J Genet Counsel 23, 239–253 (2014). https://doi.org/10.1007/s10897-013-9655-6

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