Surgical Decision-Making Surrounding Contralateral Prophylactic Mastectomy: Comparison of Treatment Goals, Preferences, and Psychosocial Outcomes from a Multicenter Survey of Breast Cancer Patients.

BACKGROUND: Differences in patient characteristics and decision-making preferences have been described between those who elect breast-conserving surgery (BCS), unilateral mastectomy (UM), or contralateral prophylactic mastectomy (CPM) for breast cancer. However, it is not known whether preferred and actual decision-making roles differ across these surgery types, or whether surgery choice reflects a woman's goals or achieves desired outcomes. METHODS: Women diagnosed with stage 0-III unilateral breast cancer across eight large medical centers responded to a mailed questionnaire regarding treatment decision-making goals, roles, and outcomes. These data were linked to electronic medical records. Differences were assessed using descriptive analyses and logistic regression. RESULTS: There were 750 study participants: 60.1% BCS, 17.9% UM, and 22.0% CPM. On multivariate analysis, reducing worry about recurrence was a more important goal for surgery in the CPM group than the others. Although women's preferred role in the treatment decision did not differ by surgery, the CPM group was more likely to report taking a more-active-than-preferred role than the BCS group. On multivariate analysis that included receipt of additional surgery, posttreatment worry about both ipsilateral and contralateral recurrence was higher in the BCS group than the CPM group (both p < 0.001). The UM group was more worried than the CPM group about contralateral recurrence only (p < 0.001). CONCLUSIONS: Women with CPM were more likely to report being able to reduce worry about recurrence as a very important goal for surgery. They were also the least worried about ipsilateral breast recurrence and contralateral breast cancer almost two years postdiagnosis.

Variation in coordination of care reported by breast cancer patients according to health literacy.

BACKGROUND: Health literacy is the ability to perform basic reading and numerical tasks to function in the healthcare environment. The purpose of this study is to describe how health literacy is related to perceived coordination of care reported by breast cancer patients. METHODS: Data were retrieved from the Patient-Centered Outcomes Research Institute-sponsored "Share Thoughts on Breast Cancer" Study including demographic factors, perceived care coordination and responsiveness of care, and self-reported health literacy obtained from a mailed survey completed by 62% of eligible breast cancer survivors (N = 1221). Multivariable analysis of variance was used to characterize the association between presence of a single healthcare professional that coordinated care ("care coordinator") and perceived care coordination, stratified by health literacy level. RESULTS: Health literacy was classified as low in 24% of patients, medium in 34%, and high in 42%. Women with high health literacy scores were more likely to report non-Hispanic white race/ethnicity, private insurance, higher education and income, and fewer comorbidities (all p < 0.001). The presence of a care coordinator was associated with 17.1% higher perceived care coordination scores among women with low health literacy when compared to those without a care coordinator, whereas a coordinator modestly improved perceived care coordination among breast cancer survivors with medium (6.9%) and high (6.2%) health literacy. CONCLUSION: The use of a single designated care coordinator may have a strong influence on care coordination in patients with lower levels of health literacy.