Implementation and outcomes of telephone disclosure of clinical BRCA1/2 test results |
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Authors: | Linda Patrick-Miller Brian L. Egleston Mary Daly Evelyn Stevens Dominique Fetzer Andrea Forman Lisa Bealin Christina Rybak Candace Peterson Melanie Corbman Angela R. Bradbury |
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Affiliation: | 1. Department of Medicine, Division of Hematology–Oncology, The University of Chicago, Chicago, USA;2. Center for Clinical Cancer Genetics and Global Health, The University of Chicago, Chicago, USA;3. Biostatistics Facility, Fox Chase Cancer Center, Philadelphia, USA;4. Department of Clinical Genetics, Fox Chase Cancer Center, Philadelphia, USA;5. Department of Medicine, Division of Hematology–Oncology, University of Pennsylvania, Philadelphia, USA;6. Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, USA |
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Abstract: | ObjectivesWith an increasing demand for genetic services, effective and efficient delivery models for genetic testing are needed.MethodsIn this prospective single-arm communication study, participants received clinical BRCA1/2 results by telephone with a genetic counselor and completed surveys at baseline, after telephone disclosure (TD) and after in-person clinical follow-up.ResultsSixty percent of women agreed to participate; 73% of decliners preferred in-person communication. Anxiety decreased from baseline to post-TD (p = 0.03) and satisfaction increased (p < 0.01). Knowledge did not change significantly from baseline to post-TD, but was higher post-clinical follow-up (p = 0.04). Cancer patients had greater declines in state anxiety and African-American participants reported less increase in satisfaction. 28% of participants did not return for in-person clinical follow-up, particularly those with less formal education, and higher post-disclosure anxiety and depression (p < 0.01).ConclusionsTelephone disclosure of BRCA1/2 test results may not be associated with negative cognitive and affective responses among willing patients, although some subgroups may experience less favorable responses. Some patients do not return for in-person clinical follow-up and longitudinal outcomes are unknown.Practice implicationsFurther evaluation of longitudinal outcomes of telephone disclosure and differences among subgroups can inform how to best incorporate telephone communication into delivery of genetic services. |
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Keywords: | Genetic testing Cancer susceptibility Cancer risk assessment Communication |
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