Background: A diagnosis of metastatic breast cancer (BC) forces patients and providers to make difficult treatment decisions.
Objective: To pilot test a decision aid (DA) for advanced BC.
Design: Pretest, posttest study.
Setting: Two academic cancer centers in Boston, Massachusetts.
Patients: Fifty patients diagnosed with advanced BC.
Intervention: A patient DA that consisted of a 30-minute DVD and booklet.
Measurements: Patients were surveyed at baseline, after the intervention, and at 3 months.
Measures: included use and acceptability of DA, distress, treatment goals, and preference for and actual participation in decisions. Physicians were surveyed at baseline and 3 months. Measures included treatment goals, assessment of patients' experience with treatments, and patients' preference for and actual participation in decisions.
Results: Thirty-two patients (64%) enrolled and completed the baseline survey, 30 completed the postvideo survey, and 25 completed the 3-month survey. The DA was acceptable and did not increase distress. The majority desired to share decision making with their doctor. Only 38% achieved their desired level of participation. At baseline, agreement between patients and providers on the main goal of treatment (lengthen life v. relieve symptoms) was 50% (kappa = -0.045, P = 0.71), and at 3 months it was 74% (kappa = 0.125, P = 0.48).
Conclusions: . It is feasible to perform a clinical trial of a DA with advanced BC patients. Most participants wanted to participate in decisions about their care and found the DA acceptable. This study highlights several issues in developing and implementing DAs in this vulnerable population facing complex decisions.