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

E. Kilsdonk, E. Wendel, E. van Dulmen-den Broeder, F. E. van Leeuwen, M. H. van den Berg, M. W. Jaspers

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17 Citations (Scopus)


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.

Original languageEnglish
Article numbere12462
Pages (from-to)e12462
JournalEuropean journal of cancer care
Issue number6
Early online date2017
Publication statusPublished - 1 Nov 2017


  • childhood cancer survivors
  • invitation strategies
  • participation
  • questionnaires

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