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

Abstract

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.

The views of New Zealand general practitioners and patients on a proposed risk assessment and communication tool: a qualitative study using Normalisation Process Theory

“…In contrast, doctors felt they give an adequate amount of information about medication and risk, based on their personal assessment of their patients, which may well reflect their own biases and exacerbate inequity [60]. These findings are consistent with previous research exploring patients' and doctors' attitudes towards information sharing [61][62][63][64][65]. As has been found elsewhere, doctors in our study typically found it difficult to communicate risk [66][67][68].…”

Patient attitudes towards side effect information: An important foundation for the ethical discussion of the nocebo effect of informed consent

“…In one survey, patients felt that information about severe side effects was more important than information about mild side effects. 16 When patients had to rate the importance of information about side effects (‘0 = not important at all’; ‘100 = extremely important’), the average response was 84 and 63 for major and minor side effects, respectively, 26 similarly implying that information about severe side effects was more important than mild side effects. Likewise, a survey found that 44% wanted to be informed of a severe very rare side effect, and only 28% of a mild very rare side effect.…”

“…Furthermore, a consistent minority, averaging around 10% (ranging from 0.4% to 42%) does not want any information about side effects. 15,16,19–21,23–25 One reason for patients wanting no or little information about side effects seemed to be that ‘ignorance is bliss’. 25…”

“…24 Similar views were found in another survey, where 74% felt they had received sufficient information about potential side effects. 16…”

“…24 On the other hand, 57% of patients felt that information would be reassuring, 24 and patients disagreed that detailed information about potential side effects would increase anxiety. 16 Furthermore, one survey found that patients who were worried about side effects also tended to want more information about side effects. 15 Thus, there seems to be a discrepancy between clinician and patient opinions in terms of how information about side effects affects the patient.…”