Information and support for women following the primary treatment of breast cancer

OBJECTIVE: To examine the need for, use of and satisfaction with information and support following primary treatment of breast cancer. DESIGN: Cross-sectional survey. PARTICIPANTS: Cohort of 266 surviving women diagnosed with breast cancer over a 25-month period at a tertiary hospital, Adelaide, Australia. Time since diagnosis ranged from 6 to 30 months. MAIN OUTCOME MEASURES: Need for, use of and satisfaction with information and support. RESULTS: Women reported high levels of need for information about a variety of issues following breast cancer treatment. Ninety-four percentage reported a high level of need for information about one or more issues, particularly recognizing a recurrence, chances of cure and risk to family members of breast cancer. However, few women (2-32%) reported receiving such information. The most frequently used source of information was the surgeon followed by television, newspapers and books. The most frequently used source of support was family followed by friends and the surgeon. Few women (<7%) used formal support services or the Internet. Women were very satisfied with the information and support that they received from the surgeon and other health professionals but reported receiving decreasing amounts of information and support from them over time. CONCLUSIONS: Women experience a high need for information about breast cancer related issues following primary treatment of breast cancer. These needs remain largely unmet as few women receive information about issues that concern them. The role of the surgeon and other health professionals is critical in narrowing the gap between needing and receiving information.