STABILITY OF BREAST CANCER PATIENTS' KNOWLEDGE, GOALS AND DECISION MAKING PROCESS AROUND BREAST RECONSTRUCTION: DOES WHEN YOU ASK MATTER?

Purpose: Feasibility is a key aspect of performance measures.  For many surgical decisions, identifying and surveying patients is only feasible after the surgery.  However, there are concerns, e.g. with recall bias, that may influence results. The objective of this study was to examine how breast cancer patients’ reports of knowledge, goals and involvement in breast reconstruction decisions change over time. 

Methods: Longitudinal multi-site study of breast cancer patients (stage 0-III) who had mastectomy at two academic medical centers. Patients were surveyed  about 4 weeks after mastectomy and again 1 year later. Both surveys assessed patients’ knowledge, goals and involvement in decision making about reconstruction. We tested hypotheses that (1) knowledge scores would decline and (2) involvement scores would stay the same and (3) goals would become more aligned with treatment received.

Results: Eighty-six patients (Response Rate: 67%) completed the 4 week survey and 77 patients (Response Rate: 89.5%) completed the 1 year survey. About half (52%) had reconstruction with implants, 14% with flap and 33% did not have reconstruction.  The mean total knowledge score was lower at baseline than at 1 year (55.3% (SD 14.7%) vs. 58.8% (SD 14.2%), p <0.001).  The majority (80%) scored within  11% (one item) of their baseline knowledge score.  Most women understood that reconstruction had a longer recovery time (76%) and require more than one procedure (77%), but few (10%) knew the chance of serious complications. The mean total involvement score was lower at baseline than at 1 year (62.6% (SD 25.9%) vs. 64.5% (SD 25.7%), p <0.001).  The majority (94%) discussed reconstruction as an option, while only 52% discussed using a prosthesis as an option. For the group who had reconstruction, one of the goals, importance of looking natural with clothes, declined slightly (mean scores 9.2 at baseline vs. 8.9 at 1 year, p=0.05). None of the other goals changed significantly over time for either those who had reconstruction or those who did not. 

Conclusions:  On average, knowledge scores, involvement scores and goals stayed fairly stable over time. These results suggest that it may be reasonable to survey breast cancer patients up to a year after the decision and use aggregate data to evaluate quality of reconstruction choices.