Advertisement

Journal of Genetic Counseling

, Volume 25, Issue 5, pp 1010–1018 | Cite as

Analysis of Advantages, Limitations, and Barriers of Genetic Counseling Service Delivery Models

  • Stephanie A. Cohen
  • Rachelle C. Huziak
  • Shanna Gustafson
  • Robin E. Grubs
Original Research

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.

Keywords

Service delivery models Genetic counseling Access 

Notes

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.

Compliance with ethical standards

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.

Supplementary material

10897_2016_9932_MOESM1_ESM.docx (15 kb)
Appendix A (DOCX 14 kb)

References

  1. 2014 NSGC Professional Status Survey Executive Summary. (2014). Retrieved April 28, 2014, from www.nsgc.org.
  2. 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.CrossRefPubMedGoogle Scholar
  3. 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.CrossRefPubMedGoogle Scholar
  4. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. doi: 10.1191/1478088706qp063oa.CrossRefGoogle Scholar
  5. Charmaz, K. (2004). Premises, principles, and practices in qualitative research: revisiting the foundations. Qualitative Health Research, 14(7), 976–993. doi: 10.1177/1049732304266795.CrossRefPubMedGoogle Scholar
  6. 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.CrossRefPubMedGoogle Scholar
  7. 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.CrossRefPubMedGoogle Scholar
  8. 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.CrossRefPubMedGoogle Scholar
  9. 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.CrossRefGoogle Scholar
  10. 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.CrossRefPubMedGoogle Scholar
  11. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  12. Fox, S. (2011). Health, digital divide. Pew Internet. from www.pewinternet.org/reports/2011/healthtopics.
  13. 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.CrossRefPubMedGoogle Scholar
  14. 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.CrossRefPubMedGoogle Scholar
  15. 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.CrossRefPubMedGoogle Scholar
  16. 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.CrossRefPubMedGoogle Scholar
  17. 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.CrossRefPubMedGoogle Scholar
  18. 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.CrossRefPubMedGoogle Scholar
  19. 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.CrossRefPubMedGoogle Scholar
  20. 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.Google Scholar
  21. 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.CrossRefGoogle Scholar
  22. 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.
  23. 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.CrossRefPubMedGoogle Scholar
  24. 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.
  25. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  26. 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.CrossRefPubMedGoogle Scholar
  27. 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.CrossRefPubMedGoogle Scholar
  28. 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.
  29. 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.
  30. 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).Google Scholar
  31. 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.CrossRefPubMedGoogle Scholar
  32. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  33. Wang, V. (2000). Commentary: what is and is not telephone counseling? Journal of Genetic Counseling, 9(1), 73–82. doi: 10.1023/A:1009437308575.CrossRefPubMedGoogle Scholar
  34. 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.CrossRefPubMedGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2016

Authors and Affiliations

  • Stephanie A. Cohen
    • 1
  • Rachelle C. Huziak
    • 2
  • Shanna Gustafson
    • 3
  • Robin E. Grubs
    • 4
  1. 1.Cancer Genetics Risk Assessment ProgramSt. Vincent HealthIndianapolisUSA
  2. 2.Cancer Genetics ProgramUniversity of Pittsburgh Medical CenterPittsburghUSA
  3. 3.InformedDNASaint PetersburgUSA
  4. 4.Department of Human GeneticsUniversity of PittsburghPittsburghUSA

Personalised recommendations