Study of Long-Term Survivors Explores Health-Seeking Behaviors

By Anna Shaffer, LBBC Staff

This study explores how long-term survivors seek health information so intervention programs can be designed to help them manage their health

Sponsored By: Thomas Jefferson University and the Commonwealth of Pennsylvania

If you are more than five years past your diagnosis of early stage breast cancer and live in the Philadelphia area, you may be eligible to participate in a small pilot study obtaining baseline data on the information-seeking behaviors of long-term breast cancer survivors.

The study, led by Julie Becker, PhD, MPH, of Thomas Jefferson University, held several focus groups in the fall and winter exploring information such as how long-term survivors conceptualize their health status; how they get information on health issues; what sources they use for health information; how they access health information; how they know that information is valid; and how they think about themselves as survivors. Between 8-15 women participated in each focus group, with the groups facilitated by Dr. Becker and Andrea Crivelli-Kovach, PhD, CHES, from Arcadia University. Results were analyzed and will be used to tailor aspects of a self-management program that will be implemented later this spring addressing five key areas: problem solving, decision making, resource utilization, forming a patient/healthcare provider partnership and direct action. The self-management program has been developed by Stanford Patient Education Resource Center. This is the first time this program has been used exclusively for people with cancer, especially long-term breast cancer survivors.

As part of this new study, Dr. Becker is now recruiting volunteers to participate in the self-management program to teach long-term survivors specific skills. The groups consist of six weeks focusing on skill development. Each session lasts about 2.5 hours per week. A portion of the intervention at the end of each session will be tailored for long-term breast cancer survivors. Information at this tailored session comes from the issues raised by focus group participants.

This study is funded by a grant from the state of Pennsylvania. Researchers hope the baseline data obtained by this study will lead to more in-depth research and a larger study.

Study Objectives:

1. To understand the knowledge and attitudes of long-term breast cancer survivors about maintaining their cancer-free status and their health, as well to as understand their health information seeking behaviors.

2. To test if a self-management program can increase awareness of more general health issues and help women increase their information-seeking behaviors, increase skills to manage existing symptoms, and lessen the potential for other health problems.

Who may participate?

Researchers are recruiting women from Southeastern Pennsylvania for the self-management programs, including Bucks, Chester, Delaware, Montgomery, and Philadelphia counties and southern New Jersey. If you are five or more years post diagnosis and do not have metastasis, and if you are between 45 and 72 years of age, your help is essential to determining how to help women affected by breast cancer maintain their disease-free status and enhance their quality of life. Please call 215-955-7713 for more information.

For more information, contact: 215.955.7713

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