Characteristics of Uncertainty in Advanced Pediatric Cancer Conversations

Abstract 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 to 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 ( 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.