Attitudes toward disclosure of medication side effects: A nationwide survey of Korean patients, caregivers, and oncologists

Background We aimed to compare the views of cancer patients, family caregivers, and oncologists about the disclosure of side effects in respect to their probability of occurrence, severity, and treatment purpose. We also compared attitudes toward potential harm of side effect disclosure, patients' perceived ability to understand the risk of the side effects, and informed decision-making regarding side effects. Methods A national survey was performed with 750 patient-caregiver dyads (75.5% participation rate) recruited by 134 oncologists in 13 cancer centers (93% participation rate). Attitudes toward communication of side effects were assessed in terms of drug purpose, severity of potential complications, and probability of harm. Results Most patients (82.1-87.0%) and caregivers (75.9-81.5%) thought they should be informed of all possible drug side effects regardless of risk, severity, or drug purpose and wanted these risks to be communicated explicitly. Patients and their caregivers believed that detailed explanations of side effects did not harm patients, and further, they believed that patients could understand risks and make treatment decision based on that information. In contrast, oncologists held less positive attitudes toward providing detailed information about drug side effects, especially if they were not severe and if the drugs were designed for supportive care. Conclusion Cancer patients and family members had different perspectives and preferences regarding communication of drug side effects from their oncologists. The data from our study can serve as a guide for oncologists in presenting side effects information to their patients, as well as a basis for physician training.