Methods: Sixty-two breast cancer patients viewed a video-based decision aid about surgical treatment options. Forty-five then underwent lumpectomies; eight had mastectomies; nine had mastectomies with reconstruction. A month later, they were asked by telephone to consider various aspects of treatment and report whether their experiences were better, worse, or as expected. Aspects included: chest appearance; physical activity; prosthesis use; breast surgery, lymph node surgery and/or reconstruction pain; surgical complications; and recurrence concerns. Items were scored 0 - “worse than expected”, 50 - “about what I expected”, and 100 - “better than expected”. Patients additionally completed an 8-item health functioning screen (SF-8).

Results: Approximately half (45%) of patients reported their experiences were as expected (range= 32-65% for individual items). Patients were most likely to report that reconstruction pain, lymph node surgery, and complications were worse than expected. Conversely, they were most likely to report that prosthesis use, surgery pain, and physical activity were better than expected. Patients who had reconstruction had a higher tendency to report worse than anticipated outcomes. Means were under 50 for all items in this group except chest appearance (mean=50), though small sample size should be noted (see figure below).This trend was supported by more objective measures; SF-8 scores for physical functioning were lower for reconstruction patients than for all patients (mean=33.8 versus 46.3).

Conclusions: Decision aids have been shown to help create realistic expectations. On average, participant's anticipation of and experience with treatment matched about half of the time. Over- or underestimating the impact of outcomes can lead to poor quality decisions. The data suggest patients who have reconstruction may need more assistance developing realistic expectations of treatment results.

Figure: Reconstruction Patients' Responses