Patient centered experiences in breast cancer: predicting long-term adherence to tamoxifen use.

BACKGROUND: Among breast cancer patients, tamoxifen use is associated with reduced risk of disease relapse and death, but it is often difficult for women to sustain therapy during the 5 years required to obtain maximum benefit.

OBJECTIVES: We sought to examine the influence of patient-centered care activities on ongoing tamoxifen use 4 years after initiation, we examined key components of patient-centered care and rates of ongoing tamoxifen.

METHODS: Using a prospective cohort study that included observational data from the National Initiative for Cancer Care Quality (NICCQ), we studied 881 patients with stage I-III breast cancer who were registered with an initial diagnosis in 1998 by an American College of Surgeons-approved hospital cancer registry in 1 of 5 metropolitan areas, who initiated tamoxifen treatment. A patient survey and medical record abstraction were used as measurements.

RESULTS: Among women who initiated tamoxifen, 79% were still taking it 4 years later. Other than older age and the severity of side effects, other demographic, clinical and cancer characteristics, and treatments did not predict ongoing tamoxifen use. In contrast, after adjusting for these factors, the proportion of patients with ongoing tamoxifen use was lower for patients reporting less support than needed (82% vs. 69%, P = 0.0051), less than wanted role in decision-making (80% vs. 70%, P = 0.0486), decision-making about tamoxifen without doctor input (79% vs. 64%, P = 0.0182), and for patients who weren't told about side effects in advance (82% vs. 72%, P = 0.0016).

CONCLUSIONS: Although age and the severity of side-effects remain important, patient-centered care was a primary mediator of patient adherence to ongoing cancer treatment with tamoxifen.