Symptom Monitoring in Pediatric Oncology Using Patient-Reported Outcomes: Why, How, and Where Next
Allison Barz Leahy1,2, Chris Feudtner3,4, Ethan Basch5,6
1Division of Oncology, Children's Hospital of Philadelphia, Colket Translational Research Building, 10th floor, 3501 Civic Center Blvd Philadelphia, Philadelphia, PA, 19104, USA. barza@email.chop.edu.
Insights
Patient-reported outcomes (PROs) can improve pediatric oncology care, but symptom monitoring is underutilized. Further research is needed to integrate PROs into routine care and clinical trials for children with cancer.
Area of Science:
- Pediatric Oncology
- Health Informatics
- Patient-Reported Outcomes
Background:
- Patient-reported outcomes (PROs) for symptom monitoring are underused in pediatric oncology despite benefits seen in adult oncology.
- Stakeholders like patients, families, and clinicians show interest in PRO implementation.
- Existing clinical benefits in adult populations highlight the potential for pediatric applications.
Purpose of the Study:
- Examine foundational data for patient symptom reporting in pediatric oncology.
- Propose next steps for implementing PRO-based symptom monitoring in pediatric cancer care and research.
- Discuss the rationale and feasibility of using PRO measures for symptom tracking in this population.
Main Methods:
- Review of existing literature and data on PROs in pediatric oncology.
- Discussion of specific tools and electronic platforms for pediatric symptom reporting.
- Analysis of patient and clinician engagement strategies for symptom self-reporting.
- Examination of early adopter experiences in pediatric oncology and general pediatrics.
Main Results:
- Foundational data supports the use of PROs for symptom monitoring in pediatric oncology.
- Innovative electronic platforms are being developed to engage children in symptom reporting.
- Key challenges remain, including outcome selection, managing discrepant reports, and determining clinical benefit.
Conclusions:
- Despite remaining challenges, continued investigation into PROs for symptom monitoring is crucial.
- Efforts should focus on establishing PRO-based symptom monitoring as an evidence-based practice in pediatric oncology.
- Further research is needed to address outcome selection, report discrepancies, and benefit determination.
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.
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