Breast Cancer: Your Decision Notebook® offers evidence-based information about surgical, radiation, chemotherapeutic, and hormonal treatment options and reconstruction options to women who have been recently diagnosed with breast cancer. The product helps patients make decisions by offering interactive decision tools and personal stories from breast cancer survivors. Topics include effects of treatments on their lives, clarifying their own needs as well as the needs of their family, and generating questions for discussion with their physicians, nurses, or health counselors. Interactive questions, comparisons, and tips help guide the user through the decisions she faces.

$39.95

Breast cancer will strike approximately one in eight American women over their life span, with 178,700 new cases anticipated in 1999. This Phase II SBIR will result in a multimedia CD-ROM, Breast Cancer: Your Decision Notebook®, that will help women make informed breast cancer treatment decisions. The product will focus on the personal aspects of the treatment, giving women an opportunity to consider non-medical needs during the treatment period, to learn how a suggested treatment will impact their lives, and to learn ways to manage these impacts. In Phase II, we will research and produce remaining informational content and graphic elements and concurrently identify and develop additional decision-support tools for the CD-ROM. The complete decision-support system will include information about breast cancer, its treatments, and the impact of those treatments, as well as tools for more effective information processing, treatment comparisons, treatment-related problem-solving, and clarification of treatment-related preferences and values. Product effectiveness in increasing women's confidence about their treatment decision will be field tested with recently diagnosed women.

As a Principal of HealthMark Multimedia, Dr. Brink is responsible for program design and development. Dr. Brink has been responsible for many aspects of project management, including recruitment and hiring of project personnel and consultants, research design, monitoring of field work, outcome and process evaluations, instrument development, analysis, and general project oversight. She has considerable experience in qualitative and quantitative evaluation of traditional and media-based health education products. Dr. Brink has been the PI on nine Small Business Innovation Research (SBIR) projects using multimedia technologies. These products have all been subjected to a rigorous process of identification of key messages and content; translation of messages and content into images, activities, and skills; and product testing.

• Susan Brink, DrPH, Principal Investigator

• Ann McFarren, RN, Project Director

• Jane Lincoln, MSW, Assistant Project Director

• Amelia Birney, MPH, Instructional Designer

• Jennifer Malone, Production Assistant

• HealthMark Multimedia

Aim1:

To research and produce remaining informational content and graphic elements for the CD-ROM.

Aim2:

To identify and develop additional decision-support tools for the CD-ROM.

Aim3:

To produce a complete decision-support system, Breast Cancer: Your Decision Notebook®, that includes information about breast cancer, its treatments, and the impact of those treatments, as well as tools for more effective information processing, patient-provider communication, treatment-related problem-solving, and clarification of treatment-related preferences and values.

Aim4:

To test the effectiveness of the CD-ROM to help recently diagnosed women with early-stage breast cancer learn about the various treatment options, feel confident participating in treatment decisions, and feel satisfied with the decisions.

Compared to women receiving readily available and accepted print material about breast cancer, women who use the CD-ROM will:

• Demonstrate increased knowledge about (1) the treatment procedures and (2) side effects of treatments.

• Report increased self-efficacy in communicating their treatment-related values and preferences to their health care providers.

• Report increased self-efficacy in their ability to integrate their personal needs and their treatment needs.

• Report increased self-efficacy in participating with their physician(s) on treatment decisions.

• Report increased self-efficacy in comparing options and making a personal treatment decision.

• Report increased satisfaction with their treatment decisions.

The effectiveness of the CD-ROM was tested against an alternate source of breast cancer knowledge with a randomized controlled trial. After pretest, women were given either the CD-ROM or Dr. Susan Love’s Breast Book. There was a posttest at the conclusion of the study period.

Twenty-two women who had been diagnosed with breast cancer and who had not yet made a final surgical decision

Written pretest and posttest questionnaires

Knowledge, self-efficacy, decision satisfaction

Change scores were compared for the experimental and control groups.

There was no difference posttest intervention on knowledge, self-efficacy, or decisional satisfaction. Each group did make similar significant pre- to postintervention changes in knowledge and self-efficacy.

Information on CD-ROM and book usage indicates that similar proportions of women in each group used the material in the same manner. There were also no differences between groups on issues related to patient involvement in their care, such as comparing treatment options, identifying questions, communicating options, considering their involvement in the decision, or making a decision that they were comfortable with.

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