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

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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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Author information

Authors and Affiliations

  1. Division of Oncology, Children’s Hospital of Philadelphia, Colket Translational Research Building, 10th floor, 3501 Civic Center Blvd Philadelphia, Philadelphia, PA, 19104, USA

    Allison Barz Leahy

  2. Pediatric Advanced Care Team, Department of Medical Ethics, Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Chris Feudtner

  3. Department of Pediatrics, Medical Ethics and Health Policy, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA

    Chris Feudtner

  4. Department of Health Policy and Management, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Ethan Basch

  5. Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Ethan Basch

  6. Division of Hematology, Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Allison Barz Leahy

Authors
  1. Allison Barz Leahy
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  2. Chris Feudtner
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  3. Ethan Basch
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Contributions

Allison Barz Leahy: literature review, development of central ideas and arguments, and preparation of manuscript. Chris Feudtner: refinement of central ideas and arguments; review and revision of manuscript; and final approval. Ethan Basch: concept design and refinement; review and revision of manuscript; and final approval.

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Correspondence to Allison Barz Leahy.

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Funding

No specific funding source was used for the preparation of this article. Dr. Barz Leahy is supported by a National Institute of Health Grant, T32 HD060550-07.

Conflict of interest

Allison Barz Leahy: no conflicts of interest exist. Chris Feudtner: no conflicts of interest exist. Ethan Basch: no financial conflicts of interest exist. Dr. Basch’s research group has received grant funding from the National Cancer Institute and the Patient-Centered Outcomes Research Institute (PCORI) to support research on patient-reported outcomes.

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Leahy, A.B., Feudtner, C. & Basch, E. Symptom Monitoring in Pediatric Oncology Using Patient-Reported Outcomes: Why, How, and Where Next. Patient 11, 147–153 (2018). https://doi.org/10.1007/s40271-017-0279-z

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