Abstract
Previous studies on genetic counseling service delivery models (SDMs) have shown that genetic counselors (GCs) are incorporating alternate models to address growing service demand and improve access to genetic services. This study sought to identify barriers, limitations and advantages to previously identified genetic counseling SDMs. A qualitative research design was employed, in which 20 practicing GCs who utilize a variety of SDMs were interviewed using an email interview format. Interview transcripts were analyzed using a thematic analysis to identify themes related to implementation and utilization of SDMs. Factors that led GCs to implement SDMs other than in-person genetic counseling included: 1) travel distance, 2) wait time and 3) convenience. Logistical issues such as billing and reimbursement, equipment set up, making arrangements for genetic testing and the inability to see the patient are major limitations to alternative genetic counseling SDMs in clinical practice. However, GCs interviewed stated that the convenience to the patient and genetic counselor of alternative SDMs outweighed these limitations. More research is needed to assess the outcomes of SDMs in practice to demonstrate an impact on the identified barriers of travel distance, wait time and convenience.
Similar content being viewed by others
References
2014 NSGC Professional Status Survey Executive Summary. (2014). Retrieved April 28, 2014, from www.nsgc.org.
Abrams, D. J., & Geier, M. R. (2006). A comparison of patient satisfaction with telehealth and on-site consultations: a pilot study for prenatal genetic counseling. Journal of Genetic Counseling, 15(3), 199–205. doi:10.1007/s10897-006-9020-0.
Baumanis, L., Evans, J., Callanan, N., & Susswein, L. (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.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. doi:10.1191/1478088706qp063oa.
Charmaz, K. (2004). Premises, principles, and practices in qualitative research: revisiting the foundations. Qualitative Health Research, 14(7), 976–993. doi:10.1177/1049732304266795.
Coelho, J. J., Arnold, A., Nayler, J., Tischkowitz, M., & MacKay, J. (2005). An assessment of the efficacy of cancer genetic counselling using real-time videoconferencing technology (telemedicine) compared to face-to-face consultations. European Journal of Cancer, 41(15), 2257–2261. doi:10.1016/j.ejca.2005.06.020.
Cohen, S., Gustafson, S., Marvin, M., Riley, B., Uhlmann, W., Liebers, S., & Rousseau, J. (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.
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(4), 411–421. doi:10.1007/s10897-013-9588-0.
Cox, S. L., Zlot, A. I., Silvey, K., Elliott, D., Horn, T., Johnson, A., & Leman, R. F. (2012). Patterns of cancer genetic testing: a randomized survey of oregon clinicians. Journal of Cancer Epidemiology, 2012, 11. doi:10.1155/2012/294730.
Doughty Rice, C., Ruschman, J. G., Martin, L. J., Manders, J. B., & Miller, E. (2010). Retrospective comparison of patient outcomes after in-person and telephone results disclosure counseling for BRCA1/2 genetic testing. Familial Cancer, 9(2), 203–212. doi:10.1007/s10689-009-9303-3.
Elwyn, G., Edwards, A., Iredale, R., Davies, P., & Gray, J. (2005). Identifying future models for delivering genetic services: a nominal group study in primary care. BMC Family Practice, 6(1), 14. doi:10.1186/1471-2296-6-14.
Fox, S. (2011). Health, digital divide. Pew Internet. from www.pewinternet.org/reports/2011/healthtopics.
Gray, J., Brain, K., Iredale, R., Alderman, J., France, E., & Hughes, H. (2000). A pilot study of telegenetics. Journal of Telemedicine and Telecare, 6(4), 245–247.
Gustafson, S. L., Pfeiffer, G., & Eng, C. (2011). A large health system’s approach to utilization of the genetic counselor CPT[reg] 96040 code. Genetics in Medicine, 13(12), 1011–1014.
Hamilton, R. J., & Bowers, B. J. (2006). Internet recruitment and e-mail interviews in qualitative studies. Qualitative Health Research, 16(6), 821–835. doi:10.1177/1049732306287599.
Harrison, T. A., Doyle, D. L., McGowan, C., Cohen, L., Repass, E., Pfau, R. B., & Brown, T. (2010). Billing for medical genetics and genetic counseling services: a national survey. Journal of Genetic Counseling, 19(1), 38–43. doi:10.1007/s10897-009-9249-5.
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.
Koil, C. E., Everett, J. N., Hoechstetter, L., Ricer, R. E., & Huelsman, K. M. (2003). Differences in physician referral practices and attitudes regarding hereditary breast cancer by clinical practice location. Genetics in Medicine, 5(5), 364–369.
Lea, D. H., Johnson, J. L., Ellingwood, S., Allan, W., Patel, A., & Smith, R. (2005). Telegenetics in Maine: successful clinical and educational service delivery model developed from a 3-year pilot project. Genetics in Medicine, 7(1), 21–27.
McIhenny, C. V., Guzic, B. L., Knee, D. R., Wendekier, C. M., Demuth, B. R., & Roberts, J. B. (2011). Using technology to deliver healthcare education to rural patients. Rural and Remote Health, 11, 1798.
Meho, L. I. (2006). E-mail interviewing in qualitative research: a methodological discussion. Journal of the American Society for Information Science and Technology, 57(10), 1284–1295. doi:10.1002/asi.20416.
Meropol, N. J., Daly, M. B., Vig, H. S., Manion, F. J., Manne, S. L., Mazar, C., . . . Zubarev, V. (2011). Delivery of Internet-based cancer genetic counselling services to patients’ homes: a feasibility study. Journal of Telemedicine and Telecare, 17(1), 36–40. doi:10.1258/jtt.2010.100116.
Ormond, K., Haun, J., Cook, L., Duquette, D., Ludowese, C., & Matthews, A. (2000). Recommendations for telephone counseling. Journal of Genetic Counseling, 9(1), 63–71. doi:10.1023/A:1009433224504.
Peshkin, B. N., Demarco, T. A., Graves, K. D., Brown, K., Nusbaum, R. H., Moglia, D., . . . Schwartz, M. D. (2008). Telephone genetic counseling for high-risk women undergoing BRCA1 and BRCA2 testing: rationale and development of a randomized controlled trial. Genet Test, 12(1), 37–52. doi:10.1089/gte.2006.0525.
Platten, U., Rantala, J., Lindblom, A., Brandberg, Y., Lindgren, G., & Arver, B. (2012). The use of telephone in genetic counseling versus in-person counseling: a randomized study on counselees’ outcome. Familial Cancer, 11(3), 371–379. doi:10.1007/s10689-012-9522-x.
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.
Sangha, K., Dircks, A., & Langlois, S. (2003). Assessment of the effectiveness of genetic counseling by telephone compared to a clinic visit. Journal of Genetic Counseling, 12(2), 171–184. doi:10.1023/A:1022663324006.
Schwartz, M. D., Valdimarsdottir, H. B., Peshkin, B. N., Mandelblatt, J., Nusbaum, R., Huang, A. T., . . . King, L. (2014). Randomized Noninferiority Trial of Telephone Versus In-Person Genetic Counseling for Hereditary Breast and Ovarian Cancer. J Clin Oncol. doi:10.1200/jco.2013.51.3226.
Sutphen, R., Davila, B., Shappell, H., Holtje, T., Vadaparampil, S., Friedman, S., . . . Armstrong, J. (2010a). Real world experience with cancer genetic counseling via telephone. Familial Cancer, 9(4), 681–689. doi:10.1007/s10689-010-9369-y.
Sutphen, R., Steenblock, K., Carmany, E., Trivedi, A., & Lewis, K. (2010b). Identification and Referral of Appropriate Patients for Genetic Serivces in the Community Setting: An Innovative Approach. San Antonio Breast Cancer Symposium (P2-10-06).
Tempest, V., Iredale, R., Gray, J., France, L., Anstey, S., & Steward, J. (2005). Pedigree construction and disease confirmation: a pilot study in Wales exploring the role of nonclinical personnel. European Journal of Human Genetics, 13(9), 1063–1070. doi:10.1038/sj.ejhg.5201454.
Vig, H. S., & Wang, C. (2012). The evolution of personalized cancer genetic counseling in the era of personalized medicine. Familial Cancer, 11(3), 539–544. doi:10.1007/s10689-012-9524-8.
Wang, V. (2000). Commentary: what is and is not telephone counseling? Journal of Genetic Counseling, 9(1), 73–82. doi:10.1023/A:1009437308575.
Zilliacus, E., Meiser, B., Lobb, E., Dudding, T. E., Barlow-Stewart, K., & Tucker, K. (2010). The virtual consultation: practitioners’ experiences of genetic counseling by videoconferencing in Australia. Telemedicine and e-Health, 16(3), 350–357. doi:10.1089/tmj.2009.0108.
Acknowledgments
Thanks to the NSGC Service Delivery Model Task Force for input on the design of this study and to thesis committee members Elizabeth A. Gettig, MS, CGC and Jessica Burke, PhD, MHS.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of Interest
Authors Stephanie A. Cohen, Rachelle C. Huziak and Robin E. Grubs declare they have no conflict of interest.
Author Shanna Gustafson declares she is employed by a private company which uses telephone genetic counseling and owns shares in the company.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all participants for being included in the study.
Animal Studies
No animal studies were carried out by the authors for this article.
Electronic supplementary material
Below is the link to the electronic supplementary material.
Appendix A
(DOCX 14 kb)
Rights and permissions
About this article
Cite this article
Cohen, S.A., Huziak, R.C., Gustafson, S. et al. Analysis of Advantages, Limitations, and Barriers of Genetic Counseling Service Delivery Models. J Genet Counsel 25, 1010–1018 (2016). https://doi.org/10.1007/s10897-016-9932-2
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10897-016-9932-2