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

*Corresponding author for this work

Research output: Contribution to journalReview articleAcademicpeer-review

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.

Original languageEnglish
Article numbere12462
JournalEuropean Journal of Cancer Care
Volume26
Issue number6
DOIs
Publication statusPublished - 1 Nov 2017

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