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Pilot study of a decision aid on BRCA1/2 genetic testing among Orthodox Jewish women

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Abstract

Introduction

Orthodox Jewish women face unique social, cultural, and religious factors that may influence uptake of BRCA1/2 genetic testing. We examined the impact of a web-based decision aid (DA) on BRCA1/2 genetic testing intention/completion among Orthodox Jewish women. We conducted a single-arm pilot study among 50 Orthodox Jewish women who were given access to a web-based DA entitled RealRisks and administered serial surveys at baseline and 1 and 6 months after exposure to the DA. Descriptive statistics were conducted for baseline characteristics and study measures. Comparisons were made to assess changes in study measures over time. Fifty Orthodox Jewish women enrolled in the study with a mean age of 43.9 years (standard deviation [SD] 14.6), 70% Modern Orthodox, 2% with personal history of breast cancer, and 68% and 16% with a family history of breast or ovarian cancer, respectively. At baseline, 27 (54%) participants intended to complete genetic testing. Forty-three participants (86%) completed RealRisks and the 1-month survey and 38 (76%) completed the 6-month survey. There was a significant improvement in BRCA1/2 genetic testing knowledge and decrease in decisional conflict after exposure to the DA. At 1 month, only 20 (46.5%) completed or intended to complete genetic testing (p = 0.473 compared to baseline). While the DA improved genetic testing knowledge and reduced decisional conflict, genetic testing intention/completion did not increase over time. Future interventions should directly address barriers to BRCA1/2 genetic testing uptake and include input from leaders in the Orthodox Jewish community.

ClinicalTrials.gov ID

NCT03624088 (8/7/18).

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Data availability

No datasets were generated or analysed during the current study.

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Acknowledgements

This publication was supported by the National Institutes of Health through Grant Numbers KL2TR001874, R01CA226060, P30CA013696, UL1TR000040, and the Susan G. Komen Foundation, through Grant Number PDF16378127. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

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Authors and Affiliations

  1. Department of Medicine, Vagelos College of Physicians and Surgeons, Columbia University, 161 Fort Washington Avenue HIP 10, New York, NY, 10032, USA

    Meghna S. Trivedi & Katherine D. Crew

  2. College of Law, DePaul University, Chicago, IL, USA

    Haley Manley

  3. Department of Health and Behavior Studies, Teachers College, Columbia University, New York, NY, USA

    Haeseung Yi

  4. Department of Biomedical Informatics, Vagelos College of Physicians and Surgeons, Columbia University, New York, NY, USA

    Thomas Silverman & Rita Kukafka

  5. Department of Pediatrics, Boston Children’s Hospital, Boston, MA, USA

    Wendy K. Chung

  6. Department of Psychiatry, Vagelos College of Physicians and Surgeons, Columbia University, New York, NY, USA

    Paul S. Appelbaum

  7. Institute for Applied Research and Community Collaboration (ARCC), Spring Valley, NY, USA

    Rebecca Starck & Isaac Schecter

  8. Achieve Behavioral Health, Monsey, NY, USA

    Isaac Schecter

Authors
  1. Meghna S. Trivedi
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  2. Haley Manley
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  3. Haeseung Yi
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  4. Thomas Silverman
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  5. Wendy K. Chung
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  6. Paul S. Appelbaum
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  7. Rebecca Starck
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  8. Isaac Schecter
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  9. Rita Kukafka
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  10. Katherine D. Crew
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by MST, HM, and KDC. The first draft of the manuscript was written by MST and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Meghna S. Trivedi.

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Ethical approval

Subjects have given their written informed consent and the study protocol was approved by the Institutional Review Board at Columbia University.

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The authors have no conflicts of interest to declare.

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Trivedi, M.S., Manley, H., Yi, H. et al. Pilot study of a decision aid on BRCA1/2 genetic testing among Orthodox Jewish women. Familial Cancer (2024). https://doi.org/10.1007/s10689-024-00371-6

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