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Quality of Life Research

, Volume 24, Issue 6, pp 1297–1301 | Cite as

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

  • Puja G. Whitlow
  • Mae Caparas
  • Patricia Cullen
  • Christine Trask
  • Fiona Schulte
  • Leanne Embry
  • Rajaram Nagarajan
  • Donna L. Johnston
  • Lillian Sung
Article

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.

Keywords

Quality of life Pediatric cancer Supportive care Multicenter clinical trials 

Notes

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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Copyright information

© Springer International Publishing Switzerland 2014

Authors and Affiliations

  • Puja G. Whitlow
    • 1
  • Mae Caparas
    • 2
  • Patricia Cullen
    • 3
  • Christine Trask
    • 4
  • Fiona Schulte
    • 5
  • Leanne Embry
    • 6
  • Rajaram Nagarajan
    • 1
  • Donna L. Johnston
    • 7
  • Lillian Sung
    • 8
  1. 1.Division of OncologyCincinnati Children’s Hospital Medical CenterCincinnatiUSA
  2. 2.Children’s Oncology GroupMonroviaUSA
  3. 3.Division of Nursing, Loretto Heights School of NursingRegis UniversityDenverUSA
  4. 4.Neuropsychology Program, Department of PsychiatryRhode Island HospitalProvidenceUSA
  5. 5.Departments of Oncology and Paediatrics, Alberta Children’s Hospital Research Institute, and Haematology, Oncology and Transplant Program, Alberta Children’sUniversity of CalgaryCalgaryCanada
  6. 6.Department of PediatricsUniversity of Texas Health Science Center at San AntonioSan AntonioUSA
  7. 7.Division of Haematology/OncologyChildren’s Hospital of Eastern OntarioOttawaCanada
  8. 8.Division of Haematology/OncologyThe Hospital for Sick ChildrenTorontoCanada

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