Bryan A Sisk1, Annie B Friedrich2, James DuBois3, Jennifer W Mack4. 1. Department of Pediatrics, Washington University School of Medicine, St. Louis, MO, USA. Electronic address: siskb@wustl.edu. 2. Albert Gnaegi Center for Health Care Ethics, Saint Louis University, St. Louis, MO, USA. 3. Department of Medicine, Washington University School of Medicine, St. Louis, MO, USA. 4. Pediatric Oncology and Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts, and Department of Pediatrics, Boston Children's Hospital, Boston, MA, USA.
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 8.5-19) 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.
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.
Authors: Joachim Cohen; Kim Beernaert; Anne van Driessche; Joni Gilissen; Aline De Vleminck; Marijke Kars; Jurrianne Fahner; Jutte van der Werff Ten Bosch; Luc Deliens Journal: BMC Pediatr Date: 2022-04-15 Impact factor: 2.567