Objective: Physicians are mandated to offer treatment choices to patients, yet not all patients may want the responsibility that entails. We evaluated predisposing factors for, and long-term consequences of, too much and not enough perceived decision-making responsibility among breast cancer patients.
Design: Longitudinal assessment, with measurements collected just after surgical treatment (baseline) and 6-month follow-up.
Participants: Women with early-stage breast cancer treated surgically at eight NYC hospitals, recruited for a randomized controlled trial of patient assistance to improve receipt of adjuvant treatment.
Measurements: Using logistic regression, we explored multivariable-adjusted associations between perceived treatment decision-making responsibility and a) baseline knowledge of treatment benefit and b) 6-month decision regret.
Results: Of 368 women aged 28-89 years, 72 % reported a "reasonable amount", 21 % "too much", and 7 % "not enough" responsibility for treatment decision-making at baseline. Health literacy problems were most common among those with "not enough" (68 %) and "too much" responsibility (62 %). Only 29 % of women had knowledge of treatment benefits; 40 % experienced 6-month decision regret. In multivariable analysis, women reporting "too much" vs. "reasonable amount" of responsibility had less treatment knowledge ([OR] = 0.44, [95 % CI] = 0.20-0.99; model c = 0.7343;p < 0.01) and more decision regret ([OR] = 2.,91 [95 % CI] = 1.40-6.06; model c = 0.7937;p < 0.001). Findings were similar for women reporting "not enough" responsibility, though not statistically significant.
Conclusion: Too much perceived responsibility for breast cancer treatment decisions was associated with poor baseline treatment knowledge and 6-month decision regret. Health literacy problems were common, suggesting that health care professionals find alternative ways to communicate with low health literacy patients, enabling them to assume the desired amount of decision-making responsibility, thereby reducing decision regret.