Project Overview +

Due to the complexity of information surrounding BRCA1/2 counseling and testing and its time consuming nature, efforts to facilitate the genetic counseling and education process are needed. This project aims to develop a flip book, CD-ROM, and website for use by genetics counselors with their patients covering the topics: basic genetics, cancer and genetics, genes associated with breast cancer, genetics testing, and managing cancer risk.

Aims +

Aim 1. Develop a flip book for use by genetics counselors with their patients covering the topics: basic genetics, cancer and genetics, genes associated with breast cancer, genetics testing, and managing cancer risk.

Aim 2. Develop CD-ROM, and web versions of the book.

Participants +

197 women attending a breast and ovarian cancer risk evaluation clinic for BRCA1/2 counseling.

Intervention +

Using a 2x2 factorial design, two strategies are examined:

  • A CD-ROM program for patients. The CD-ROM covers relevant information in five chapters: Basic Genetics, Cancer and Genetics, Genes Associated With Breast Cancer, Genetic Testing, and Managing Risk. It was provided to patients to watch while in the waiting room, prior to their counseling appointment.
  • A feedback checklist for genetic counselors. The checklist is completed by a patient about their knowledge of cancer and genetics and is given to the counselor prior to the start of a counseling session. This feedback checklist could help counselors understand patients' prior misconceptions so the counselors could tailor the session around the checklist results.

Women were randomized into one of four conditions:

  • standard care
  • CD-ROM only - provided to patients prior to the start of the counseling session
  • feedback to counselor only
  • both CD-ROM and feedback 
Counseling outcomes include face-to-face time with the genetics team, knowledge acquisition, changes in worry about having a gene mutation, and genetic testing decisions.

  • Findings +

    While all three versions of the genetic counseling tool, "Understanding Cancer and Genetics", were created (flip-book, CD-ROM, website), this study used the CD-ROM version.

    • Overall, women who viewed the CD-ROM spent less time with the genetic counselor and were less likely to undergo genetic testing compared to women who did not view the CD-ROM.
    • Feedback to the genetic counselor resulted in greater gains in knowledge of genetics and breast cancer.
    • Among women less worried at baseline, those who viewed the CD-ROM showed no changes in worry following genetic counseling, in contrast to those who did not view the CD-ROM who increased in worry over time. This latter finding raises concerns about the impact of the increased worry on genetic testing decisions.
    • No interaction effects of the two intervention arms were found.

    Conclusion +

    The study results support the importance of both strategies as valuable supplements to clinical BRCA1/2 counseling.