Unmet needs in information flow between breast cancer patients, their spouses, and physicians

Abstract

This study focused on the needs and sources of disease information of breast cancer patients and their spouses during early disease in two settings: at the department of oncology (AD) and on a rehabilitation course (RC). The aim was to characterize those patients and spouses who are not content with average information. Eighty percent of AD and 31% of RC patients were content with the available information (p < 0.001) and 75% of AD spouses and 43% of RC spouses reported similarly (p = 0.008). Higher education, younger age, and shorter time (<1 year) since diagnosis indicated a greater need for information among patients, whereas among spouses, only education level was associated with it. More information was needed on prognosis, cancer as a disease, its influence on daily life, and treatment effects. In both groups, the same proportion of patients reported to have felt involved in decision making sufficiently (60%), inadequately (27%), and 19% versus 16% did not want to be actively participating in decision making. The patients were mostly satisfied with participation in decision making, but they expressed unsatisfactory needs on information during early years of breast cancer. Similarly, their spouses were not content with available information.