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Symptom assessment in children receiving cancer therapy: the parents’ perspective

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Abstract

Goals of work

We aimed to develop an instrument to assess cancer-treatment-related adverse effects that parents believe children find most bothersome and use it to solicit the opinions of parents regarding this issue.

Materials and methods

Parents of children 4 to 18 years of age who had received intravenous antineoplastic therapy in the last month were asked to rank prevalence, severity, and degree of bother of each symptom on behalf of their child using a questionnaire.

Main results

One hundred fifty-eight of 200 (82%) questionnaires were evaluable. The most prevalent symptoms identified were mood swings (85%), fatigue (80%), and disappointment at missing activities with friends/peers (74%). These symptoms were also most commonly identified as being significantly severe. Symptoms most commonly identified as the most bothersome were disappointment at missing activities with friends/peers (50%) and feeling worried about receiving treatment, procedures, or side effects (43%). Symptoms most commonly identified as the most severe and bothersome were disappointment at missing activities with friend/peers (46%); feeling worried about receiving treatment, procedures, or side effects (40%); and painful, aching, or stiff bones, joints, or muscles (36%).

Conclusions

This information can be used when explaining the effects of cancer treatment to patients/families, creating policies regarding pediatric cancer care and framing research hypotheses in pediatric supportive care.

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Acknowledgments

This study was supported by a research grant from the Pediatric Oncology Group of Ontario. LS is supported by a Career Development Award from the Canadian Child Health Clinician Scientist Training Program, a strategic training program of the Canadian Institutes of Health Research. The authors acknowledge M.A. Stumpf PhD for assistance in formatting the questionnaire; D. Cook, Team Assistant, and H. Reid, Learning and Organization Effectiveness, London Health Sciences Centre, for evaluating questionnaire readability; K. Fung, J. Miller, C. Maan, A. McDermid, and I. Sjoberg for reviewing the draft questionnaire; and C. Lai, L. MacPhail, and A. Cranston for facilitating patient recruitment.

Author information

Authors and Affiliations

  1. Department of Pharmacy, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada

    L. Lee Dupuis & Cathryn Sibbald

  2. Division of Haematology/Oncology, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada

    L. Lee Dupuis & Lillian Sung

  3. Department of Psychology, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada

    Maru Barrera

  4. Child Health Evaluative Sciences—Research Institute, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada

    L. Lee Dupuis & Lillian Sung

  5. Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, ON, Canada

    L. Lee Dupuis

  6. Public Health Sciences, Institute of Medical Sciences, University of Toronto, Toronto, ON, Canada

    Maru Barrera

  7. Ontario Institute of Studies on Education, University of Toronto, Toronto, ON, Canada

    Maru Barrera

  8. Paediatric Haematology/Oncology, Children’s Hospital at London Health Sciences Centre, London, ON, Canada

    Cindy Milne-Wren

  9. Division of Hematology/Oncology, Children’s Hospital of Eastern Ontario, Ottawa, ON, Canada

    Marilyn Cassidy & Donna L. Johnston

  10. Division of Hematology/Oncology, McMaster University, Hamilton, ON, Canada

    Carol Portwine

  11. Kingston General Hospital, Kingston, ON, Canada

    Mariana Pradier Silva

  12. Alberta Children’s Hospital, Calgary, AB, Canada

    Michael Leaker

  13. Kingston Military Family Resource Centre, Kingston, ON, Canada

    Stacey Routh

Authors
  1. L. Lee Dupuis
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  2. Cindy Milne-Wren
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  3. Marilyn Cassidy
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  4. Maru Barrera
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  5. Carol Portwine
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  6. Donna L. Johnston
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  7. Mariana Pradier Silva
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  8. Cathryn Sibbald
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  9. Michael Leaker
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  10. Stacey Routh
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  11. Lillian Sung
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Corresponding author

Correspondence to L. Lee Dupuis.

Appendices

Appendix 1

Appendix 2

Prevalence, severity, and extent of bother of each symptom included in questionnaire as identified by parents of children receiving cancer treatment

Table 6
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Dupuis, L.L., Milne-Wren, C., Cassidy, M. et al. Symptom assessment in children receiving cancer therapy: the parents’ perspective. Support Care Cancer 18, 281–299 (2010). https://doi.org/10.1007/s00520-009-0651-1

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  • DOI: https://doi.org/10.1007/s00520-009-0651-1

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