Development and testing of a disease-specific health literacy measure in kidney transplant patients.

CONTEXT: Health literacy affects a patient's ability to navigate through the system of care for late-stage kidney disease, including evaluation, waiting, and recovering from kidney transplant. OBJECTIVES: To develop and provide a preliminary evaluation of a knowledge and decision-making capacity tool, which is a component of health literacy. DESIGN: Cross-sectional design with purposive sampling. SETTING: Vascular access, dialysis, and outpatient transplant clinics. METHODS: A Decision-Making Capacity Assessment Tool (DMCAT) was developed and administered to 127 adults at different stages in the kidney care process. RESULTS: The DMCAT tool is positively and significantly correlated to the other 2 previously validated instruments and accounts for more variance than the other 2 tools in the regression models. We found significant differences in patients' health literacy and decision-making capacity related to their stage of care. Decision-making capacity appeared to be an important component of health literacy and should be considered as health care providers tailor care to meet patients' needs.