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Patient-Reported Outcomes in Pediatric Oncology: The Voice of the Child

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Pediatric Oncology Nursing

Part of the book series: Pediatric Oncology ((PEDIATRICO))

Abstract

Children with cancer frequently experience disease-related symptoms and treatment toxicities that directly affect their ability to function in multiple domains and their overall quality of life. Understanding these effects of cancer and its treatment is essential to developing preventative treatments. Nurses’ deepest understanding can best be gained when the ill child’s self-reports of the subjective effects are systematically collected and considered throughout the treatment trajectory. Accurately recording the ill child’s perspectives in symptom and toxicity screening, and in ongoing assessments of function and quality of life will also determine the effect of the preventative interventions. Proxy reporting has been shown to be important, particularly in those circumstances that the child is unable to self-report. However, inconsistencies between the ill child’s self-report and the proxy report have been documented, with little attention to the reasons for the differences. Fortunately, self-reports from the ill child are increasingly being recognized as the primary source of subjective symptom, toxicity, function and quality of life reports, and these reports are supported by the existence of validated instruments for children with cancer.

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Authors and Affiliations

  1. Child Health Evaluative Sciences, Peter Gilgan Centre for Research and Learning, The Hospital for Sick Children, Toronto, ON, Canada

    Deborah Tomlinson

  2. School of Nursing, Fudan University, Shanghai, China

    Changrong Yuan & Lei Cheng

  3. Research Center of Patient Experience, Fudan University, Shanghai, China

    Changrong Yuan & Lei Cheng

  4. Department of Nursing Science, Professional Practice and Quality, Children’s National Health System, Washington, DC, USA

    Pamela S. Hinds

  5. Department of Pediatrics, The George Washington University, Washington, DC, USA

    Pamela S. Hinds

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  1. Deborah Tomlinson
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  2. Changrong Yuan
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  3. Lei Cheng
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  4. Pamela S. Hinds
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Correspondence to Deborah Tomlinson .

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Editors and Affiliations

  1. Department of Nursing Science, Professional Practice, and Quality, Children’s National Hospital, Washington, DC, USA

    Pamela S. Hinds

  2. College of Nursing, University of Utah, Salt Lake City, UT, USA

    Lauri Linder

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Tomlinson, D., Yuan, C., Cheng, L., Hinds, P.S. (2020). Patient-Reported Outcomes in Pediatric Oncology: The Voice of the Child. In: Hinds, P., Linder, L. (eds) Pediatric Oncology Nursing. Pediatric Oncology. Springer, Cham. https://doi.org/10.1007/978-3-030-25804-7_7

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