Providers' knowledge of genetics: A survey of 5915 individuals and families with genetic conditions.

@article{citeulike:2784386, abstract = {PURPOSE: Individuals affected by genetic conditions are increasingly likely to seek information about inheritance and risk factors from their primary care physicians rather than a geneticist, but several studies suggest that few health care providers are capable of fulfilling that role or are comfortable doing so. Acknowledging that the adoption of new genetics knowledge and technologies is often patient-driven, we asked affected individuals and family members about their experiences in encounters with a variety of nongenetics-trained health care providers. METHODS: Staff at the National Coalition for Health Professional Education in Genetics, the Genetic Alliance, and a University of Maryland graduate student in genetic counseling drafted a web-based survey. We recruited study participants from the Genetic Alliance, and a total of 5915 respondents completed the questionnaire between December 2004 and August 2005. RESULTS: Overall, 64\% of respondents reported receiving no genetics education materials from the provider type named most important in the management of the condition in the family. We present knowledge ratings for various provider types and themes emerging from written descriptions of positive and disappointing experiences. CONCLUSION: We discuss the implications of these and other results for continuing genetics education and for clinical practice.}, address = {National Coalition for Health Professional Education in Genetics, Lutherville, Maryland 21093, USA. ekharvey@comcast.net}, author = {Harvey, E. K. and Fogel, C. E. and Peyrot, M. and Christensen, K. D. and Terry, S. F. and McInerney, J. D. }, citeulike-article-id = {2784386}, doi = {10.1097/GIM.0b013e31805002f2}, issn = {1098-3600}, journal = {Genetics in medicine : official journal of the American College of Medical Genetics}, keywords = {education, opinion, physicians, survey}, month = {May}, number = {5}, pages = {259--267}, posted-at = {2008-05-11 14:34:16}, priority = {4}, title = {Providers' knowledge of genetics: A survey of 5915 individuals and families with genetic conditions.}, url = {http://dx.doi.org/10.1097/GIM.0b013e31805002f2}, volume = {9}, year = {2007} }

TY - JOUR ID - citeulike:2784386 L3 - citeulike-article-id:2784386 TI - Providers' knowledge of genetics: A survey of 5915 individuals and families with genetic conditions. JF - Genetics in medicine : official journal of the American College of Medical Genetics VL - 9 IS - 5 SP - 259 EP - 267 AD - National Coalition for Health Professional Education in Genetics, Lutherville, Maryland 21093, USA. ekharvey@comcast.net SN - 1098-3600 N2 - PURPOSE: Individuals affected by genetic conditions are increasingly likely to seek information about inheritance and risk factors from their primary care physicians rather than a geneticist, but several studies suggest that few health care providers are capable of fulfilling that role or are comfortable doing so. Acknowledging that the adoption of new genetics knowledge and technologies is often patient-driven, we asked affected individuals and family members about their experiences in encounters with a variety of nongenetics-trained health care providers. METHODS: Staff at the National Coalition for Health Professional Education in Genetics, the Genetic Alliance, and a University of Maryland graduate student in genetic counseling drafted a web-based survey. We recruited study participants from the Genetic Alliance, and a total of 5915 respondents completed the questionnaire between December 2004 and August 2005. RESULTS: Overall, 64% of respondents reported receiving no genetics education materials from the provider type named most important in the management of the condition in the family. We present knowledge ratings for various provider types and themes emerging from written descriptions of positive and disappointing experiences. CONCLUSION: We discuss the implications of these and other results for continuing genetics education and for clinical practice. KW - education KW - opinion KW - physicians KW - survey AU - Harvey, EK AU - Fogel, CE AU - Peyrot, M AU - Christensen, KD AU - Terry, SF AU - McInerney, JD PY - 2007/05// UR - http://dx.doi.org/10.1097/GIM.0b013e31805002f2 ER -