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Journal of Genetic Counseling

Erschienen in:

14.01.2016 | Original Research

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

verfasst von: Stephanie A. Cohen, Rachelle C. Huziak, Shanna Gustafson, Robin E. Grubs

Erschienen in: Journal of Genetic Counseling | Ausgabe 5/2016

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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.

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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.CrossRefPubMed

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.CrossRefPubMed

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. doi:10.1191/1478088706qp063oa.CrossRef

Charmaz, K. (2004). Premises, principles, and practices in qualitative research: revisiting the foundations. Qualitative Health Research, 14(7), 976–993. doi:10.1177/1049732304266795.CrossRefPubMed

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRef

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.CrossRefPubMed

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.CrossRefPubMedPubMedCentral

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRef

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.CrossRefPubMed

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.CrossRefPubMedPubMedCentral

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRefPubMedPubMedCentral

Wang, V. (2000). Commentary: what is and is not telephone counseling? Journal of Genetic Counseling, 9(1), 73–82. doi:10.1023/A:1009437308575.CrossRefPubMed

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.CrossRefPubMed

Titel: Analysis of Advantages, Limitations, and Barriers of Genetic Counseling Service Delivery Models
verfasst von: Stephanie A. Cohen
Rachelle C. Huziak
Shanna Gustafson
Robin E. Grubs
Publikationsdatum: 14.01.2016
Verlag: Springer US
Erschienen in: Journal of Genetic Counseling / Ausgabe 5/2016
Print ISSN: 1059-7700
Elektronische ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-016-9932-2

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