TY - JOUR
T1 - Providers' knowledge of genetics
T2 - A survey of 5915 individuals and families with genetic conditions
AU - Harvey, Erin K.
AU - Fogel, Chana E.
AU - Peyrot, Mark
AU - Christensen, Kurt D.
AU - Terry, Sharon F.
AU - McInerney, Joseph D.
PY - 2007/5
Y1 - 2007/5
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.
AB - 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 - Advocacy
KW - Families
KW - Genetics education
KW - Patients
KW - Providers' knowledge
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U2 - 10.1097/GIM.0b013e31805002f2
DO - 10.1097/GIM.0b013e31805002f2
M3 - Article
C2 - 17505202
AN - SCOPUS:34249051675
SN - 1098-3600
VL - 9
SP - 259
EP - 267
JO - Genetics in Medicine
JF - Genetics in Medicine
IS - 5
ER -