Objectives: To describe the initiation, response, and content of communication about uncertainty in advanced pediatric cancer. Methods: Qualitative analysis of 35 audio-recorded outpatient consultations between physicians and families of children whose cancer recently progressed. We defined uncertainty as “future-oriented lack of clarity in which answers are unknown to all participants involved in the conversation.” Results: Conversations contained a median of 14 (interquartile range 8.5–19) uncertainty statements related to 6 topics: appropriateness of treatments, acute toxicities and morbidities, prognosis or response to treatment, diagnostic uncertainty, logistical uncertainty, and long-term toxicities. Physicians initiated 63 % of statements (303/489), parents initiated 33 % (165/489), and children initiated 2% (10/489). We identified 14 unique responses to uncertainty: 11 responses provided space for discussion, 3 responses reduced space. Physicians most commonly responded by providing additional information (38 %, 361/947). Parents most often responded with continuing statements, such as “um” or “yeah” (50 %, 313/622). Children seldom responded (<1%, 12/1697). Conclusion: Physicians initiated most uncertainty discussions, and their responses often provided space for further discussion. Children were seldom involved in these conversations. Practice implications: Clinicians should consider maintaining open conversations about uncertainties in advanced pediatric cancer, and consider engaging children in these discussions.
- Pediatric oncology
- Physician-patient relationship
- Psychosocial oncology
- Supportive care