Unmet information needs and limited health literacy in newly diagnosed breast cancer patients over the course of cancer treatment

• Unmet information needs changed over the course of breast cancer treatment.
• Unmet information needs were higher among patients with limited health literacy.
• Different changes in unmet information needs by health literacy were observed.

ObjectiveTo investigate unmet information needs in newly diagnosed breast cancer patients over the course of cancer treatment and its association with health literacy.MethodsWe present results from a prospective, multicenter cohort study (PIAT). Newly diagnosed breast cancer patients (N = 1060) were surveyed directly after breast cancer surgery, 10 and 40 weeks later. Pooled linear regression modeling was employed analyzing changes in unmet information needs over time and its association with health literacy.ResultsUnmet information needs on side effects and medication and medical examination results and treatment options were high and increased during the first 10 weeks after breast cancer surgery. Considering health promotion and social issues, unmet information needs started high and decreased during post-treatment. Patients with limited health literacy had higher unmet information needs.ConclusionOur results indicate a mismatch in information provision and breast cancer patients’ information needs. Patients with limited health literacy may be at a distinct disadvantage in having their information needs met over the course of breast cancer treatment.Practice implicationsStrategies are needed to reduce unmet information needs in breast cancer patients considering treatment-phase and health literacy and thereby enable them to better cope with their diseases.