Congress Abstracts 2006

20

AN ELECTRONIC ENVIRONMENT FOR CONDUCTING QUALITY OF LIFE RESEARCH: THE FERTILITY AND BREAST CANCER PROJECT. Karen Hassey Dow, PhD, RN, FAAN, University of Central Florida, Orlando, FL; and Patrick McNees, PhD, Applied Health Science, Inc., Orlando FL.

The impact of cancer treatment on fertility is a major distress among young breast cancer survivors. To assist young women with breast cancer to understand the factors and issues affecting fertility and identify reproductive options, we developed the Fertility and Cancer Project, a novel psychoeducational and support research project conducted entirely in an electronic environment.

The purpose of this paper is: (a) illustrate the components of the Fertility and Cancer Project; (b) discuss unique partnerships with breast cancer advocates, and technological and research security experts; (c) report site activity and participant usage patterns; and (d) articulate the challenges in the deployment of a comprehensive Internet-based research project for young women with breast cancer.

The conceptual model was based on principles of patient education and quality of life. Furthermore, we developed a conceptual algorithmic scheme to guide the development process and devised specific strategies and tactics for addressing issues such as confidentiality, privacy, and remote data access.

The Fertility and Cancer Project consists of educational and materials and support resources accessed via the Internet. Education focused on normal reproductive function, personal and cancer treatment factors affecting fertility, assisted reproductive technologies, infertility information, and alternative parenting options. Support services included access to a bulletin board discussion and links to breast cancer and infertility resources. Subject recruitment, screening, informed consent, study enrollment, QOL baseline assessment, education and support delivery, data management, analysis, and participant communication were addressed. We used an iterative rapid prototyping approach for user interface aspects of the site design. Electronic announcements were made through cancer support groups. Site activity and participant usage patterns were monitored. Descriptive statistics were used for data analysis.

During the first 12 months, there were nearly 96,000 hits from over 30 countries with an average of 7.5 minutes per session. Sixty-nine subjects representing 8 countries including the United States enrolled in the project. Once registered, participants averaged 25 minutes per visit. Research conducted in an electronic environment requires strong collaboration with web designers, database specialists, security experts, and advocacy groups. While considerable collaboration is required, quality of life research can be facilitated through an electronic environment.