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Quality of life of pediatric oncology patients: Do patient-reported outcome instruments measure what matters to patients?

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Abstract

Purpose

The assessment of quality of life (QOL) is key within pediatric oncology and requires a clearly defined construct of QOL. The purpose of our study was: (1) to conduct a qualitative study to inform the theoretical underpinnings of QOL and (2) to determine the appropriateness of patient-reported outcome (PRO) instruments to assess and evaluate QOL in pediatric cancer patients and survivors.

Methods

The study used an interpretative description approach. Children diagnosed with childhood cancer, aged 8–18 years, were recruited from four Canadian hospitals. Semi‐structured interviews were completed, transcribed verbatim and coded through methods of constant comparison. In-depth analysis facilitated a comparison between emerging themes and the content of commonly used PRO instruments.

Results

Thirty-seven children (19 females; 51 %) participated. The mean age was 13 years, and 19 (51 %) participants were post-treatment. Participant experiences reflected notions of positive and negative duality, including: maintaining physical functioning but longing for the ability to participate in activities; experiencing a new level of intimacy with family and friends amidst isolation; and developing positivity amidst anger, sadness and lingering worry. Analysis showed that existing PRO instruments are missing concerns specific to this population and contain content not reflective of the QOL experiences of childhood cancer patients and survivors.

Conclusions

Our research highlights important problems with content validity of existing PRO scales, indicating that the tools we have to date have limited utility in research and clinical practice. The development of a new PRO instrument should be considered to ensure that content validity is achieved.

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Acknowledgments

This research study was conducted with support from C17 and partially funded by Kids with Cancer Society, Childhood Cancer Canada Foundation and Coast to Coast Against Cancer Foundation. Samantha Anthony was a recipient of a Canadian Institutes of Health Research Postdoctoral Fellowship. Anne Klassen and Lillian Sung were recipients of Canadian Institutes of Health Research career awards.

Funding

This research study was conducted with support from C17 and partially funded by Kids with Cancer Society, Childhood Cancer Canada Foundation and Coast to Coast Against Cancer Foundation. Samantha Anthony was a recipient of a Canadian Institutes of Health Research Postdoctoral Fellowship. Anne Klassen and Lillian Sung were recipients of Canadian Institute of Health Research career awards.

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Authors and Affiliations

  1. Department of Pediatrics, McMaster University, Hamilton, ON, Canada

    Samantha J. Anthony, Enid Selkirk & Anne F. Klassen

  2. Division of Haematology/Oncology, Peter Gilgan Centre for Research and Learning, The Hospital for Sick Children, 686 Bay Street – 6.9710, Toronto, ON, M5G 0A4, Canada

    Samantha J. Anthony & Lillian Sung

  3. Department of Pediatrics, Children’s Hospital of Eastern Ontario, Ottawa, ON, Canada

    Robert J. Klaassen

  4. Department of Pediatrics Hem/Onc/BMT, BC Children’s Hospital, Vancouver, BC, Canada

    David Dix

Authors
  1. Samantha J. Anthony
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  2. Enid Selkirk
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  3. Lillian Sung
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  4. Robert J. Klaassen
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  5. David Dix
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  6. Anne F. Klassen
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Corresponding author

Correspondence to Samantha J. Anthony.

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Conflict of interest

All authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in this study were in accordance with the ethical standards of all participating institutional research committees and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent or assent was obtained from all individual participants included in the study.

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Anthony, S.J., Selkirk, E., Sung, L. et al. Quality of life of pediatric oncology patients: Do patient-reported outcome instruments measure what matters to patients?. Qual Life Res 26, 273–281 (2017). https://doi.org/10.1007/s11136-016-1393-4

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  • DOI: https://doi.org/10.1007/s11136-016-1393-4

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