P4-15-03: Patient-Provider Communication and Patient Informational Needs for Breast Reconstruction Post-Mastectomy: Results from a National Survey.
Authors: Ahmed I , Gubin A , Champion L , Harvey A , Amsellem M 
Published: June 2012

For many women, the complexity of processing and learning about their breast cancer diagnosis is further complicated by decisions to be made about breast reconstruction post-mastectomy. Existing studies suggest that these women are provided with information about breast reconstruction options of differing depth, breadth, and quality, but little is known about how this information is received by the patient as well as the value of this information. Guided by Social Cognitive Theory, the Cancer Support Community (CSC) conducted a national survey in an effort to better understand patients’ information-seeking experiences, patient-provider communication, and knowledge about breast reconstruction. 840 U.S. women with breast cancer (762 eligible for breast reconstruction who were then eligible to answer survey questions pertaining to their experiences) participated in the survey online or by paper-and-pencil at CSC affiliate sites in 2010. In addition to demographics, information about their diagnosis, treatment, and experience with reconstruction, women rated their experience with receiving breast reconstruction information from their healthcare professionals as well as their experience searching for and receiving information about options and realistic expectations for breast reconstruction.

Survey participants came from 46 states, were primarily Caucasian (85%), and the mean age at diagnosis was 48.9 years old. Most women reported that either a plastic surgeon (73.3%) or a breast surgeon (64.0%) had spoken to them about reconstruction, followed by oncologist (34.2%) and surgical oncologist (24.8%). Of women whose healthcare team had spoken with them about reconstruction, 57.1% reported that reconstruction was first discussed at diagnosis. Women reported that this information was somewhat (35.1%) or extremely (55.5%) useful, though they sought additional information elsewhere. Aside from their health care team, most women (60%) sought information about reconstruction from other women with breast cancer and half sought information from the Internet. Participants reported that they would have liked to have had more information prior to reconstruction about a variety of topics, including: how they would look after reconstruction (34.8% endorsing), how they would feel after reconstruction (35.5%), and information about their future breast health (25.9%). Open-ended responses suggest many patients experience gaps in information with regard to establishing realistic expectations about the procedures and outcomes, providing comprehensive information at various stages throughout the process, and across various treatment options.

Though many participants reported satisfaction with how information about reconstruction was provided to them and the quality and scope of this information, responses suggest that there is work to be done with regard to establishing realistic expectations about the procedures and outcomes, providing comprehensive information at various stages throughout the process, and across various treatment options.

Citation Information: Cancer Res 2011;71(24 Suppl):Abstract nr P4-15-03.