Karen R. Sepucha, PhD, Massachusetts General Hospital, Boston, MA, Elissa M. Ozanne, PhD, Massachusetts General Hospital, Boston, MA, Ann Partridge, MD, MPH, Dana-Farber Cancer Institute, Boston, MA, and Beverly Moy, MD, MPH, Massachusetts General Hospital, Boston, MA.
Background: Few decision aids have been developed and evaluated for the advanced disease setting. Studies have raised concerns about the feasibility of enrolling patients with advanced disease into trials. In addition, studies have suggested that patients with more advanced disease have less desire to participate in treatment decision-making. Methods: We piloted a decision aid in a before-after study of metastatic breast cancer patients at two sites. The thirty minute video, “Living with Metastatic Breast Cancer: Making the Journey Your Own” was designed to help patients reflect on issues surrounding decisions about treatment and to prepare them to communicate their values and preferences to their providers. Results: 50 women were approached over a six-month period to participate in the study. 30/50 (60%) completed both baseline and post-video surveys, and 25 completed a three month follow-up survey. The median age was 55 and the median time since diagnosis of metastatic disease was 18 months. 22% of patients were on their first line therapy for metastatic disease, 11% on second line, 33% on third line and 38% on fourth or more. Before and after the decision aid, the majority of participants (72% and 74%) desired to share decision-making equally with their doctor. The percentage of participants who felt they should primarily make decisions increased after viewing the decision aid from 7% to 15% (p=0.11). Decisional conflict was very low before and after the decision aid. At baseline, the agreement between patients and providers on the main goal of treatment (lengthen life versus relieve symptoms) was only 50%. At three months, the agreement between patients and providers on the main goal of treatment increased to 72% (p=0.02). Conclusions: Despite the challenges of enrolling metastatic breast cancer patients to a non-treatment related clinical trial, there was a reasonable rate of participation in this study. The majority of metastatic breast cancer patients desired to participate in decisions about their care. After the decision aid, more women wanted to participate and the agreement between patients and providers regarding the goals of treatment increased.