Medical College of Wisconsin
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Characteristics of uncertainty in advanced pediatric cancer conversations. Patient Educ Couns 2021 May;104(5):1066-1074

Date

10/29/2020

Pubmed ID

33109428

Pubmed Central ID

PMC8052385

DOI

10.1016/j.pec.2020.10.006

Scopus ID

2-s2.0-85093915419 (requires institutional sign-in at Scopus site)   7 Citations

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.

Author List

Sisk BA, Friedrich AB, DuBois J, Mack JW

Author

Annie B. Friedrich PhD Assistant Professor in the Institute for Health and Equity department at Medical College of Wisconsin




MESH terms used to index this publication - Major topics in bold

Child
Communication
Humans
Neoplasms
Parents
Physician-Patient Relations
Physicians
Qualitative Research
Uncertainty