How Well Informed Do Patients Feel about Their Breast Cancer Surgery Options? Findings from a Nationwide Survey of Women after Lumpectomy and/or Mastectomy

BACKGROUND: Women diagnosed with breast cancer often describe the process of treatment decision making as bewildering and worrisome. Patients who do not feel completely informed about their surgical options might make choices that are suboptimal or regretted later. The Institute of Medicine has called for more research on why breast cancer patients are inadequately informed about treatment options. The aims of the study were to explore how women become informed about their breast cancer surgery treatment options and to identify improvement opportunities. STUDY DESIGN: A nationwide internet survey was conducted among women who reported being surgically treated by lumpectomy only (n = 215), mastectomy only (n = 140), or by both procedures (n = 132) for breast cancer. To improve generalizability, Census-based enrollment quotas were applied for geographic region, health insurance, and income. RESULTS: Only 47% (95% CI 41% to 54%) of lumpectomy-only patients, 67% (95% CI 59% to 75%) of mastectomy-only patients, and 28% (95% CI 21% to 35%) of patients having both procedures said they felt "completely informed" about treatment options before their operations. "Making a quick decision" was more important than "thoroughly researching all options" for 35% of lumpectomy-only patients, 31% of mastectomy-only patients, and 22% of patients having both procedures. Nearly all women used some other source of information to research treatment options. Lumpectomy-only and mastectomy-only patients who relied on their surgeon's recommendation without additional research were significantly less likely to report feeling "completely informed" (odds ratio 0.6; 95% CI 0.4 to 0.9; p < 0.02). CONCLUSIONS: Many women who had surgery for breast cancer did not feel completely informed about their surgical options. This appears to be due, in part, to a false sense of urgency and perhaps insufficient or misdirected information gathering by patients. The responsibility for fully informing patients about their treatment options must be better fulfilled by surgeons. ((C) 2017 The Authors. Published by Elsevier Inc. on behalf of the American College of Surgeons.