Decisions about Breast Reconstruction after Mastectomy: Patient Involvement, Knowledge, and Preferences.
Authors: Lee C. , Belkora J. , Cosenza C. , Chang Y. , Levin C. , Moy B. , Partridge A. , Sepucha K. 
Published: December 2010

Background:Most breast cancer patients who have a mastectomy do not have breast reconstruction, and rates of reconstruction vary by race, education, and geographic location, suggesting problems with decision making. We sought to assess the quality of decisions about breast reconstruction by measuring patient involvement in decision making, patient knowledge, and the degree to which decisions reflected patients' goals.Methods: Breast cancer survivors from four sites who were treated with mastectomy in the past 3 years completed a mailed survey, as part of a larger study to validate decision quality instruments. The survey contained questions about the decision making process, factual questions, and questions about personal goals and concerns. Characteristics associated with knowledge were identified with linear regression. Goals/concerns associated with reconstruction were identified using logistic regression. The percent match between treatment preference and treatment received was calculated.Results: The larger study recruited 456 patients (overall response rate 59%). 91 patients completed the reconstruction module. Average age was 56.9 years, 82.6% were white, 63.7% had a college degree, and 64% had Stage I disease. 45.8% had reconstruction.Decision making: 78% of patients reported that their doctor mentioned reconstruction. Most reported a discussion of the pros of reconstruction (63.8%), whereas the minority reported a discussion of the cons (20.9%). 76% reported being asked for their preference about reconstruction. 3% said the doctor mainly made the decision, 74% said they made the decision, and 15% said both made the decision. Most (81%) felt their level of involvement was about right.Knowledge:The mean knowledge score was 32.9% (SD=19). 41% knew that reconstruction has little effect on cancer surveillance. 54% knew that recovery after implant surgery is easier than after flap surgery. 3.3% knew that about 1/3 of patients have a major complication. On bivariate analysis, reconstruction (43.3 vs. 32.6, p=0.053), higher income (43.4 vs. 26.3, p=0.008), a college degree (43.4 vs. 26.2, p&lt;0.01), and being married (40.9 vs. 29, p=0.04) were associated with higher knowledge. On multivariate analysis, higher income was associated with higher knowledge (p=0.0013).Preferences:The following goals were associated with reconstruction: “use your own tissue to make a breast” (OR 1.309, CI 1.028, 1.605), “avoid using a prosthesis” (OR 1.254, CI 1.039, 1.512), and “wake up after mastectomy with reconstruction underway” (OR 1.254, CI 1.057, 1.487). Patients who felt it was important to “avoid putting foreign material in your body” were less likely to have reconstruction (OR 0.682, CI 0.518, 0.899).The majority of patients (81%) had treatment that was concordant with preference.Conclusions: Despite reporting high involvement in decisions about reconstruction, breast cancer patients undergoing mastectomy had major knowledge deficits, and many reported having treatment they did not prefer. In addition to involving patients in decisions about reconstruction, surgeons should discuss both the pros and the cons and should explicitly ask patients for their preference about reconstruction.

Citation Information: Cancer Res 2009;69(24 Suppl):Abstract nr 3103.