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Erschienen in: Journal of Genetic Counseling 5/2012

01.10.2012 | Professional Issues

Report from the National Society of Genetic Counselors Service Delivery Model Task Force: A Proposal to Define Models, Components, and Modes of Referral

verfasst von: Stephanie A. Cohen, Shanna L. Gustafson, Monica L. Marvin, Bronson D. Riley, Wendy R. Uhlmann, S. Bonnie Liebers, Julie A. Rousseau

Erschienen in: Journal of Genetic Counseling | Ausgabe 5/2012

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Abstract

The Service Delivery Model Task Force (SDMTF) was appointed in 2009 by the leadership of the National Society of Genetic Counselors (NSGC) with a charge to research and assess the capacity of all existing service delivery models to improve access to genetic counseling services in the context of increasing demand for genetic testing and counseling. In approaching this charge, the SDMTF found that there were varying interpretations of what was meant by “service delivery models” and the group held extensive discussions about current practices to arrive at consensus of proposed definitions for current genetic service delivery models, modes of referral and components of service delivery. The major goal of these proposed definitions is to allow for conversations to begin to address the charge to the committee. We propose that current models of service delivery can be defined by: 1) the methods in which genetic counseling services are delivered (In-person, Telephone, Group and Telegenetics), 2) the way they are accessed by patients (Traditional referral, Tandem, Triage, Rescue and Self-referral) and 3) the variable components that depend upon multiple factors unique to each service setting. This report by the SDMTF provides a starting point whereby standardized terminology can be used in future studies that assess the effectiveness of these described models to overcome barriers to access to genetic counseling services.
Literatur
Zurück zum Zitat Battista, R. N., Blancquaert, I., Laberge, A. M., van Schendel, N., & Leduc, N. (2012). Genetics in health care: an overview of current and emerging models. Public Health Genomics, 15(1), 34–45.PubMedCrossRef Battista, R. N., Blancquaert, I., Laberge, A. M., van Schendel, N., & Leduc, N. (2012). Genetics in health care: an overview of current and emerging models. Public Health Genomics, 15(1), 34–45.PubMedCrossRef
Zurück zum Zitat 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. Eur J Cancer, 41(15), 2257–2261. doi:10.1016/j.ejca.2005.06.020.PubMedCrossRef 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. Eur J Cancer, 41(15), 2257–2261. doi:10.​1016/​j.​ejca.​2005.​06.​020.PubMedCrossRef
Zurück zum Zitat Dabney, M. K., & Huelsman, K. (2000). Counseling by computer: breast cancer risk and genetic testing. Developed by the University of Wisconsin-Madison Department of Medicine and the Program in Medical Ethics. Genet Test, 4(1), 43–44. doi:10.1089/109065700316453.PubMedCrossRef Dabney, M. K., & Huelsman, K. (2000). Counseling by computer: breast cancer risk and genetic testing. Developed by the University of Wisconsin-Madison Department of Medicine and the Program in Medical Ethics. Genet Test, 4(1), 43–44. doi:10.​1089/​109065700316453.PubMedCrossRef
Zurück zum Zitat 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. Fam Cancer, 9(2), 203–212. doi:10.1007/s10689-009-9303-3.PubMedCrossRef 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. Fam Cancer, 9(2), 203–212. doi:10.​1007/​s10689-009-9303-3.PubMedCrossRef
Zurück zum Zitat Gattas, M. R., MacMillan, J. C., Meinecke, I., Loane, M., & Wootton, R. (2001). Telemedicine and clinical genetics: establishing a successful service. Journal of Telemedicine and Telecare, 7(suppl 2), 68–70. doi:10.1258/1357633011937191.PubMedCrossRef Gattas, M. R., MacMillan, J. C., Meinecke, I., Loane, M., & Wootton, R. (2001). Telemedicine and clinical genetics: establishing a successful service. Journal of Telemedicine and Telecare, 7(suppl 2), 68–70. doi:10.​1258/​1357633011937191​.PubMedCrossRef
Zurück zum Zitat Green, M. J., Peterson, S. K., Baker, M. W., Friedman, L. C., Harper, G. R., Rubinstein, W. S., et al. (2005). Use of an educational computer program before genetic counseling for breast cancer susceptibility: effects on duration and content of counseling sessions. Genet Med, 7(4), 221–229.PubMedCrossRef Green, M. J., Peterson, S. K., Baker, M. W., Friedman, L. C., Harper, G. R., Rubinstein, W. S., et al. (2005). Use of an educational computer program before genetic counseling for breast cancer susceptibility: effects on duration and content of counseling sessions. Genet Med, 7(4), 221–229.PubMedCrossRef
Zurück zum Zitat Hall, A. G., Lemak, C. H., Steingraber, H., & Schaffer, S. (2008). Expanding the definition of access: it isn't just about health insurance. J Health Care Poor Underserved, 19(2), 625–638. doi:10.1353/hpu.0.0011.PubMedCrossRef Hall, A. G., Lemak, C. H., Steingraber, H., & Schaffer, S. (2008). Expanding the definition of access: it isn't just about health insurance. J Health Care Poor Underserved, 19(2), 625–638. doi:10.​1353/​hpu.​0.​0011.PubMedCrossRef
Zurück zum Zitat Heimler, A. (1990). Group counseling for couples who have terminated a pregnancy following prenatal diagnosis. Birth Defects Original Article Series, 26(3), 161–167.PubMed Heimler, A. (1990). Group counseling for couples who have terminated a pregnancy following prenatal diagnosis. Birth Defects Original Article Series, 26(3), 161–167.PubMed
Zurück zum Zitat Hooper, B., Buckman, M., & Edwards, M. (2011). Evaluation of satisfaction of parents with the use of videoconferencing for a pediatric genetic consultation. Twin Res Hum Genet, 14(4), 343–346.CrossRef Hooper, B., Buckman, M., & Edwards, M. (2011). Evaluation of satisfaction of parents with the use of videoconferencing for a pediatric genetic consultation. Twin Res Hum Genet, 14(4), 343–346.CrossRef
Zurück zum Zitat 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. Genet Med, 9(8), 487–495. doi:10.1097/GIM.0b013e31812e6220.PubMedCrossRef 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. Genet Med, 9(8), 487–495. doi:10.​1097/​GIM.​0b013e31812e6220​.PubMedCrossRef
Zurück zum Zitat Kaiser, A. S., Ferris, L. E., Pastuszak, A. L., Llewellyn-Thomas, H., Johnson, J.-A., Conacher, S., et al. (2002). The effects of prenatal group genetic counselling on knowledge, anxiety and decisional conflict: issues for nuchal translucency screening. Journal of Obstetrics & Gynaecology, 22(3), 246–255. doi:10.1080/01443610220130508.CrossRef Kaiser, A. S., Ferris, L. E., Pastuszak, A. L., Llewellyn-Thomas, H., Johnson, J.-A., Conacher, S., et al. (2002). The effects of prenatal group genetic counselling on knowledge, anxiety and decisional conflict: issues for nuchal translucency screening. Journal of Obstetrics & Gynaecology, 22(3), 246–255. doi:10.​1080/​0144361022013050​8.CrossRef
Zurück zum Zitat McAllister, M., Payne, K., Macleod, R., Nicholls, S., Donnai, D., & Davies, L. (2008). What process attributes of clinical genetics services could maximise patient benefits? Eur J Hum Genet, 16(12), 1467–1476. doi:10.1038/ejhg.2008.121.PubMedCrossRef McAllister, M., Payne, K., Macleod, R., Nicholls, S., Donnai, D., & Davies, L. (2008). What process attributes of clinical genetics services could maximise patient benefits? Eur J Hum Genet, 16(12), 1467–1476. doi:10.​1038/​ejhg.​2008.​121.PubMedCrossRef
Zurück zum Zitat Meropol, N. J., Daly, M. B., Vig, H. S., Manion, F. J., Manne, S. L., Mazar, C., et al. (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.PubMedCrossRef Meropol, N. J., Daly, M. B., Vig, H. S., Manion, F. J., Manne, S. L., Mazar, C., et al. (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.PubMedCrossRef
Zurück zum Zitat 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. Genet Test, 12(1), 37–52. doi:10.1089/gte.2006.0525.PubMedCrossRef 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. Genet Test, 12(1), 37–52. doi:10.​1089/​gte.​2006.​0525.PubMedCrossRef
Zurück zum Zitat 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. J Genet Couns, 18(1), 87–100. doi:10.1007/s10897-008-9189-5.PubMedCrossRef 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. J Genet Couns, 18(1), 87–100. doi:10.​1007/​s10897-008-9189-5.PubMedCrossRef
Zurück zum Zitat Shengelia, B., Tandon, A., Adams, O. B., & Murray, C. J. L. (2005). Access, utilization, quality, and effective coverage: an integrated conceptual framework and measurement strategy. Social Science & Medicine, 61(1), 97–109. doi:10.1016/j.socscimed.2004.11.055.CrossRef Shengelia, B., Tandon, A., Adams, O. B., & Murray, C. J. L. (2005). Access, utilization, quality, and effective coverage: an integrated conceptual framework and measurement strategy. Social Science & Medicine, 61(1), 97–109. doi:10.​1016/​j.​socscimed.​2004.​11.​055.CrossRef
Zurück zum Zitat Sutphen, R., Davila, B., Shappell, H., Holtje, T., Vadaparampil, S., Friedman, S., et al. (2010). Real world experience with cancer genetic counseling via telephone. Familial Cancer, 9(4), 681–689. doi:10.1007/s10689-010-9369-y.PubMedCrossRef Sutphen, R., Davila, B., Shappell, H., Holtje, T., Vadaparampil, S., Friedman, S., et al. (2010). Real world experience with cancer genetic counseling via telephone. Familial Cancer, 9(4), 681–689. doi:10.​1007/​s10689-010-9369-y.PubMedCrossRef
Zurück zum Zitat Wang, C., Gonzalez, R., Milliron, K. J., Strecher, V. J., & Merajver, S. D. (2005). Genetic counseling for BRCA1/2: a randomized controlled trial of two strategies to facilitate the education and counseling process. Am J Med Genet A, 134A(1), 66–73. doi:10.1002/ajmg.a.30577.PubMedCrossRef Wang, C., Gonzalez, R., Milliron, K. J., Strecher, V. J., & Merajver, S. D. (2005). Genetic counseling for BRCA1/2: a randomized controlled trial of two strategies to facilitate the education and counseling process. Am J Med Genet A, 134A(1), 66–73. doi:10.​1002/​ajmg.​a.​30577.PubMedCrossRef
Zurück zum Zitat Wham, D., Vu, T., Chan-Smutko, G., Kobelka, C., Urbauer, D., & Heald, B. (2010). Assessment of clinical practices among cancer genetic counselors. Fam Cancer. doi:10.1007/s10689-010-9326-9. Wham, D., Vu, T., Chan-Smutko, G., Kobelka, C., Urbauer, D., & Heald, B. (2010). Assessment of clinical practices among cancer genetic counselors. Fam Cancer. doi:10.​1007/​s10689-010-9326-9.
Zurück zum Zitat Young, R., Jorgenson, R., & Shapiro, S. (1986). Efficacy of and patient preference for three counseling formats. Journal of Craniofacial Genetics and Developmental Biology, 6, 3–14.PubMed Young, R., Jorgenson, R., & Shapiro, S. (1986). Efficacy of and patient preference for three counseling formats. Journal of Craniofacial Genetics and Developmental Biology, 6, 3–14.PubMed
Zurück zum Zitat Zilliacus, E. M., Meiser, B., Lobb, E. A., Kelly, P. J., Barlow-Stewart, K., Kirk, J. A., et al. (2011). Are videoconferenced consultations as effective as face-to-face consultations for hereditary breast and ovarian cancer genetic counseling? Genet Med, 13(11), 933–941. doi:10.1097/GIM.0b013e3182217a19.PubMedCrossRef Zilliacus, E. M., Meiser, B., Lobb, E. A., Kelly, P. J., Barlow-Stewart, K., Kirk, J. A., et al. (2011). Are videoconferenced consultations as effective as face-to-face consultations for hereditary breast and ovarian cancer genetic counseling? Genet Med, 13(11), 933–941. doi:10.​1097/​GIM.​0b013e3182217a19​.PubMedCrossRef
Metadaten
Titel
Report from the National Society of Genetic Counselors Service Delivery Model Task Force: A Proposal to Define Models, Components, and Modes of Referral
verfasst von
Stephanie A. Cohen
Shanna L. Gustafson
Monica L. Marvin
Bronson D. Riley
Wendy R. Uhlmann
S. Bonnie Liebers
Julie A. Rousseau
Publikationsdatum
01.10.2012
Verlag
Springer US
Erschienen in
Journal of Genetic Counseling / Ausgabe 5/2012
Print ISSN: 1059-7700
Elektronische ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-012-9505-y

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