Participation rates of childhood cancer survivors to self-administered questionnaires: a systematic review

Authors

  • E. Kilsdonk MSc,

    PhD Candidate, Corresponding author
    1. Department of Medical Informatics, Centre for Human Factors Engineering of Interactive Health Information Technology, Academic Medical Center, University of Amsterdam, Amsterdam
    • Correspondence address: Ellen Kilsdonk, Department of Medical Informatics, Centre for Human Factors Engineering of Interactive Health Information Technology, Academic Medical Center, University of Amsterdam, PO Box 22660, 1100 DD Amsterdam, the Netherlands (e-mail: e.kilsdonk@amc.uva.nl).

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  • E. Wendel MSc,

    Junior Researcher
    1. Department of Pediatrics, Division of Oncology-Hematology, VU University Medical Center, Amsterdam
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  • E. van Dulmen-den Broeder PhD,

    Senior Researcher
    1. Department of Pediatrics, Division of Oncology-Hematology, VU University Medical Center, Amsterdam
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  • F.E. van Leeuwen PhD,

    Group Leader, Head of Division
    1. Department of Epidemiology, Netherlands Cancer Institute, Amsterdam, the Netherlands
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  • M.H. van den Berg PhD,

    Post-doctoral Researcher
    1. Department of Pediatrics, Division of Oncology-Hematology, VU University Medical Center, Amsterdam
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    • van den Berg and Jaspers were contributed equally to the study.
  • M.W. Jaspers PhD

    Director (under)Graduate program, Adjunct Head
    1. Department of Medical Informatics, Centre for Human Factors Engineering of Interactive Health Information Technology, Academic Medical Center, University of Amsterdam, Amsterdam
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    • van den Berg and Jaspers were contributed equally to the study.

Abstract

This review aimed to assess participation rates of childhood cancer survivors (CCS) invited to fill out a health-related questionnaire. Additionally, effects of study and CCS characteristics on participation rates were examined. PubMed, Web of Science, Ovid (EMBASE) and CINAHL databases were searched. Publications included were questionnaire-based studies among CCS diagnosed with cancer before the age of 21, alive at least 5 years past diagnosis and aged 16 years or older at the time of study. Thirty-five studies were included; the median participation rate was 65%. Sixteen studies reported information about CCS actively declining participation (median rate 5%). Five study characteristics seemed to influence participation rates: the use of reminders and incentives, the option to answer a shortened questionnaire, the recruitment of participants through their general practitioner and a pre-notification before sending out the questionnaire. Furthermore, CCS characteristics related to improved participation were female gender, Caucasian ethnicity and a higher educational level. The results of this study will help to improve the (methodological) quality of future questionnaire-based studies among CCS, thereby increasing our knowledge about late effects among this group of survivors.

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