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Strategies to improve success of pediatric cancer cooperative group quality of life studies: a report from the Children’s Oncology Group

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Abstract

Purpose

Quality of life (QoL) has been increasingly emphasized in National Cancer Institute (NCI)-sponsored multisite clinical trials. Little is known about the outcomes of these trials in pediatric cancer. Objectives were to describe the proportion of Children’s Oncology Group (COG) QoL studies that successfully accrued subjects and were analyzed, presented or published.

Methods

We conducted a survey to describe outcomes of COG QoL studies. We included studies that contained at least one QoL assessment and were closed to patient accrual at the time of survey dissemination. Respondents were the investigators most responsible for the QoL aim.

Results

Sixteen studies were included; response rate was 100 %. Nine (56 %) studies were embedded into a cancer treatment trial. Only 3 (19 %) studies accrued their intended sample size. Seven (44 %) studies were analyzed, 9 (56 %) were presented, and 6 (38 %) were published.

Conclusions

NCI-sponsored pediatric QoL studies have high rates of failure to accrue. Many were not analyzed or disseminated. Using these data, strategies have been implemented to improve conduct in future trials. Monitoring of QoL studies is important to maximize the chances of study success.

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Acknowledgments

The authors would like to thank David Freyer, Brad Pollack, Ann O’Mara and Pam Hinds for their assistance in identifying eligible studies. This study was funded by Children’s Oncology Group Grant CA 98543 (Chair’s Grant), CA 180886 (NCTN Operation Center Grant), CA 98413 (Statistics and Data Center Grant) and CA 180899 (NCTN Statistics and Data Center Grant). The funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript.

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Authors and Affiliations

  1. Division of Oncology, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave ML 7015, Cincinnati, OH, 45229, USA

    Puja G. Whitlow & Rajaram Nagarajan

  2. Children’s Oncology Group, Monrovia, CA, USA

    Mae Caparas

  3. Division of Nursing, Loretto Heights School of Nursing, Regis University, Denver, CO, USA

    Patricia Cullen

  4. Neuropsychology Program, Department of Psychiatry, Rhode Island Hospital, Providence, RI, USA

    Christine Trask

  5. Departments of Oncology and Paediatrics, Alberta Children’s Hospital Research Institute, and Haematology, Oncology and Transplant Program, Alberta Children’s, University of Calgary, Calgary, AB, Canada

    Fiona Schulte

  6. Department of Pediatrics, University of Texas Health Science Center at San Antonio, San Antonio, TX, USA

    Leanne Embry

  7. Division of Haematology/Oncology, Children’s Hospital of Eastern Ontario, Ottawa, ON, Canada

    Donna L. Johnston

  8. Division of Haematology/Oncology, The Hospital for Sick Children, Toronto, ON, Canada

    Lillian Sung

Authors
  1. Puja G. Whitlow
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  2. Mae Caparas
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  3. Patricia Cullen
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  4. Christine Trask
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  5. Fiona Schulte
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  6. Leanne Embry
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  7. Rajaram Nagarajan
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  8. Donna L. Johnston
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  9. Lillian Sung
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Corresponding author

Correspondence to Puja G. Whitlow.

Appendix

Appendix

See Table 4.

Table 4 Details of included studies
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Whitlow, P.G., Caparas, M., Cullen, P. et al. Strategies to improve success of pediatric cancer cooperative group quality of life studies: a report from the Children’s Oncology Group. Qual Life Res 24, 1297–1301 (2015). https://doi.org/10.1007/s11136-014-0855-9

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  • DOI: https://doi.org/10.1007/s11136-014-0855-9

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