Symptom Monitoring in Pediatric Oncology Using Patient-Reported Outcomes: Why, How, and Where Next

Allison Barz Leahy (), Chris Feudtner and Ethan Basch
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Allison Barz Leahy: Children’s Hospital of Philadelphia
Chris Feudtner: Children’s Hospital of Philadelphia
Ethan Basch: University of North Carolina at Chapel Hill

The Patient: Patient-Centered Outcomes Research, 2018, vol. 11, issue 2, No 2, 147-153

Abstract: Abstract Symptom monitoring using patient-reported outcomes (PROs) is not common in pediatric oncology, despite interest from stakeholders—including patients, families, clinicians, and regulatory organizations—and proven clinical benefit in adult oncology. This article examines the foundational data for patient-reported symptom reporting in this population and posits the next investigative steps toward the implementation of patient-reported symptom monitoring in the care and research of pediatric oncology patients. The reasoning behind, and feasibility of, monitoring symptoms in pediatric oncology patients using PRO measures are discussed, as well as specific tools that have been developed to track symptoms in this population, including innovative electronic self-reporting platforms built to engage children in the symptom reporting process. Aspects of engaging both patients and clinicians in the symptom self-report process are reviewed, as are the experiences of “early adopters” of this process in pediatric oncology and across pediatrics. It is clear that there are key issues that remain regarding the use of PROs for symptom monitoring, including selection of specific outcomes to monitor, how to resolve discrepant reports, and determination of benefit. The next steps for investigation of these issues are discussed. Unanswered questions notwithstanding, work should continue to make patient-reported symptom monitoring an established, evidence-based part of routine and research practice in pediatric oncology.

Date: 2018
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DOI: 10.1007/s40271-017-0279-z

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