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Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial

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Abstract

This study reports a randomized clinical trial evaluating the efficacy of an intervention to prepare individuals to communicate BRCA1/BRCA2 results to family members. Women aged 18 years and older, who had genetic testing, and who had adult first-degree relatives, were randomly assigned to a communication skills-building intervention or a wellness control session. Primary outcomes were the percentage of probands sharing test results, and the level of distress associated with sharing. The ability of the theory of planned behavior variables to predict the outcomes was explored. Four hundred twenty-two women were enrolled in the study, 219 (intervention) and 203 (control). Data from 137 in the intervention group and 112 in the control group were analyzed. Two hundred forty-nine probands shared test results with 838 relatives (80.1 %). There were no significant differences between study groups in the primary outcomes. Combining data from both arms revealed that perceived control and specific social influence were associated with sharing. Probands were more likely to share genetic test results with their children, female relatives and relatives who they perceived had a favorable opinion about learning the results. The communication skills intervention did not impact sharing of test results. The proband’s perception of her relative’s opinion of genetic testing and her sense of control in relaying this information influenced sharing. Communication of test results is selective, with male relatives and parents less likely to be informed. Prevalent psychosocial factors play a role in the communication of genetic test results within families.

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Acknowledgments

We are indebted to the patients who participated in the study. We thank Irene Angel, Joanne Spoltore and our Partner Hospital affiliates for their assistance in recruitment and data collection, and Lorraine Crozier and Susan Steinberg for their invaluable assistance in manuscript preparation. Two grants from the National Cancer Institute, R01 CA81867 and P30 CA00692, provided funding for this study.

Conflict of interest

The authors declare that they have no conflict of interest.

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Authors and Affiliations

  1. Department of Clinical Genetics, Fox Chase Cancer Center, 333 Cottman Avenue, Philadelphia, PA, 19111, USA

    Susan V. Montgomery, Ruth Bingler & Mary B. Daly

  2. Cancer Prevention and Control Program, Fox Chase Cancer Center, Philadelphia, PA, 19111, USA

    Suzanne M. Miller

  3. Biostatistics Core, Fox Chase Cancer Center, 333 Cottman Avenue, Philadelphia, PA, 19111, USA

    Brian L. Egleston & Karen Ruth

  4. American Infrastructure, 1805 Berks Road, Worcester, PA, 19490, USA

    John Malick

  5. Reading Hospital Regional Cancer Center, South Sixth Avenue and Spruce Street, Reading, PA, 19611, USA

    Terrence P. Cescon

  6. Deparment of Medical Oncology, Thomas Jefferson University, Philadelphia, PA, 19107, USA

    Andrea M. Barsevick

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  1. Susan V. Montgomery
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  2. Andrea M. Barsevick
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  3. Brian L. Egleston
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  4. Ruth Bingler
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  5. Karen Ruth
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  9. Mary B. Daly
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Correspondence to Mary B. Daly.

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Montgomery, S.V., Barsevick, A.M., Egleston, B.L. et al. Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial. Familial Cancer 12, 537–546 (2013). https://doi.org/10.1007/s10689-013-9609-z

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  • DOI: https://doi.org/10.1007/s10689-013-9609-z

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