Abstract P2-10-04: Characterizing the metastatic breast cancer patient experience around preparing for a treatment decision
Authors: Buzaglo Joanne , Miller Melissa , Morris Anne , Harvey Allison , Golant Mitch 
Published: May 2015

Background: An estimated 155,000 people are living with metastatic breast cancer (MBC) in the US. With new developments in treatment, people are living longer with MBC and are confronted with more complex treatment decisions. Patient-provider communication is typically inadequate and patients are not fully prepared for communicating effectively with their doctor.

Methods: Since March 2013, the Cancer Support Community has registered 909 people living with MBC to the Cancer Experience Registry, an online initiative designed to learn and raise awareness about the psychosocial impact of cancer. 572 registrants responded to questions about their experience with making treatment decisions. This sample was 99% female, 91% Caucasian, and 69% with a college degree and median age 56. Median time since MBC diagnosis was 3 years.

Results: Before making a treatment decision, nearly all (91%) reported receiving information about their cancer type; 76% received information about their treatment choices. Only 41% indicated they received information about clinical trials prior to making a treatment decision. Just over half reported they had quite a bit of knowledge about their treatment options. However, 22% had little or no knowledge about their treatment options. Thirty-eight percent received treatment decision support prior to making a treatment decision; 45% would have liked more support. Twelve percent had little or no involvement in their treatment decision-making process. Nearly one-third (29%) did not feel they had a treatment choice and 28% reported they did not have enough time to make a treatment decision. Those who wrote down a list of questions prior to their first visit to discuss treatment options with their health care provider felt significantly more prepared to discuss their treatment options (p&lt;0.001). About two-thirds of MBC registrants were satisfied with various aspects of the treatment decision-making process: outcome of the treatment(s) received (70%); doctor’s explanation of the benefits of each option (67%); how they arrived at a decision (66%); how much they participated in making the decision (64%); and their doctor’s explanation of the risks and side effects (64%). Sixty-nine percent thought it would be important to get help with gathering information, and 68% with developing a written list of questions before their meetings with cancer specialists; only 47% thought it important to obtain audio-recordings of appointments.

Conclusion: Although over two thirds of these women were satisfied with various aspects of treatment decision making including their communication and interaction with their doctor around the decision, nearly 30% of women thought that they had no choice or felt rushed in making a decision. Those women who prepared a list of questions prior to a consultation with the doctor were significantly more prepared in making an appropriate decision. While a small majority of patients report being knowledgeable about treatment options, a significant proportion report not having enough knowledge or support to fully engage in a treatment decision. Further efforts are needed to address gaps in the delivery of decision support to MBC patients.

Citation Format: Joanne Buzaglo, Melissa Miller, Anne Morris, Allison Harvey, Mitch Golant. Characterizing the metastatic breast cancer patient experience around preparing for a treatment decision [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P2-10-04.