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Implementation and outcomes of telephone disclosure of clinical BRCA1/2 test results
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
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
Abstract:

Objectives

With an increasing demand for genetic services, effective and efficient delivery models for genetic testing are needed.

Methods

In 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.

Results

Sixty 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).

Conclusions

Telephone 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 implications

Further evaluation of longitudinal outcomes of telephone disclosure and differences among subgroups can inform how to best incorporate telephone communication into delivery of genetic services.
Keywords:Genetic testing   Cancer susceptibility   Cancer risk assessment   Communication
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