Purpose: To describe desired and actual roles in treatment decision making among patients with early-stage breast cancer, identify how often patients' actual roles matched their desired roles, and examine whether matching of actual and desired roles was associated with type of treatment received and satisfaction.
Patients and methods: We surveyed 1,081 women (response, 70%) diagnosed with early-stage breast cancer in Massachusetts or Minnesota about their desired and actual roles in treatment decision making with their surgeon and used logistic regression to assess whether matching of actual to desired roles was associated with type of surgery and satisfaction.
Results: Most patients (64%) desired a collaborative role in decision making, but only 33% reported actually having such a collaborative role when they discussed treatments with their surgeons. Overall, 49% of women reported an actual role that matched the desired role they reported, 25% had a less active role than desired, and 26% had a more active role than desired. In adjusted analyses, patients whose reported actual role matched their desired role were no more likely than others to undergo breast-conserving surgery (P >.2), but these women were more satisfied with their treatment choice (83.5% very satisfied; reference) than those whose role was less active than desired (72.9% very satisfied; P =.02) or more active than desired (72.2% very satisfied; P =.005).
Conclusion: Only approximately half of patients reported an actual role in decision making that matched the desired role they reported. These patients were more satisfied with their treatment choice than other patients, suggesting that women with early-stage breast cancer may benefit from surgeons' efforts to identify their preferences for participation in decisions and tailor the decision-making process to them.