Patient and provider perspectives on the development of personalized medicine: a mixed-methods approach
Autor: | Maria Esperanza Bregendahl, Sean P. David, Latha Palaniappan, Sang-Ick Chang, Neda Pakdaman, Natalie Downs, Andrea Nevedal, Eleanor T. Lewis, Lauren Puryear, Steven Charlap, Kelly E. Ormond, Carlos Suárez, Isabella M. Chu, Mark R. Cullen, Steven M. Asch |
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Rok vydání: | 2017 |
Předmět: |
0301 basic medicine
medicine.medical_specialty medicine.diagnostic_test Epidemiology business.industry Public health Public Health Environmental and Occupational Health Specialty 030105 genetics & heredity 03 medical and health sciences 0302 clinical medicine Family medicine medicine Anxiety Original Article 030212 general & internal medicine Personalized medicine Family history medicine.symptom Psychology business Insurability Genetics (clinical) Genetic testing |
Zdroj: | Journal of community genetics. 9(3) |
ISSN: | 1868-310X |
Popis: | While genetic testing gains adoption in specialty services such as oncology, neurology, and cardiology, use of genetic and genomic testing has yet to be adopted as widely in primary care. The purpose of this study is to identify and compare patient and primary care provider (PCP) expectations of genetics services in primary care. Patient and PCP perspectives were assessed through a mixed-method approach combining an online survey and semi-structured interviews in a primary care department of a large academic medical institution. A convenience sample of 100 adult primary care patients and 26 PCPs was gathered. The survey and interview questions focused on perceptions of genetic testing, experience with genetic testing, and expectations of genetic services in primary care. Patients felt that their PCP was knowledgeable about genetic testing and expected their PCP to be the first to recognize a need for genetic testing based on family history. Nonetheless, patients reported that PCPs rarely used family history information to discuss genetic risks or order testing. In contrast, PCPs felt uncertain about the clinical utility and scientific value of genetic testing. PCPs were concerned that genetic testing could cause anxiety, frustration, discrimination, and reduced insurability, and that there was unequal access to testing. PCPs described themselves as being "gatekeepers" to genetic testing but did not feel confident or have the desire to become experts in genetic testing. However, PCPs were open to increasing their working knowledge of genetic testing. Within this academic medical center, there is a gap between what patients expect and what primary care providers feel they are adequately prepared to provide in terms of genetic testing services. |
Databáze: | OpenAIRE |
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