title: Participation rates of childhood cancer survivors to self-administered questionnaires: a systematic 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.
authors.affiliation: Department of Medical Informatics, Centre for Human Factors Engineering of Interactive Health Information Technology, Academic Medical Center, University of Amsterdam, Amsterdam.
authors.forename: E
authors.initials: E
authors.lastname: Kilsdonk
authors.affiliation: Department of Pediatrics, Division of Oncology-Hematology, VU University Medical Center, Amsterdam.
authors.forename: E
authors.initials: E
authors.lastname: Wendel
authors.affiliation: Department of Pediatrics, Division of Oncology-Hematology, VU University Medical Center, Amsterdam.
authors.forename: E
authors.initials: E
authors.lastname: van Dulmen-den Broeder
authors.affiliation: Department of Epidemiology, Netherlands Cancer Institute, Amsterdam, the Netherlands.
authors.forename: F E
authors.initials: FE
authors.lastname: van Leeuwen
authors.affiliation: Department of Pediatrics, Division of Oncology-Hematology, VU University Medical Center, Amsterdam.
authors.forename: M H
authors.initials: MH
authors.lastname: van den Berg
authors.affiliation: Department of Medical Informatics, Centre for Human Factors Engineering of Interactive Health Information Technology, Academic Medical Center, University of Amsterdam, Amsterdam.
authors.forename: M W
authors.initials: MW
authors.lastname: Jaspers
mesh_terms: D000293:Adolescent; D000328:Adult; D000073116:Cancer Survivors / Q000706:statistics & numerical data*; D002648:Child; D004522:Educational Status; D005006:Ethnicity / Q000706:statistics & numerical data*; D005260:Female; D058005:General Practitioners; D006801:Humans; D008297:Male; D009042:Motivation; D010358:Patient Participation / Q000706:statistics & numerical data*; D018579:Patient Selection; D017010:Reminder Systems; D057566:Self Report; D012737:Sex Factors; D011795:Surveys and Questionnaires; D044465:White People; D055815:Young Adult
keywords: childhood cancer survivors; invitation strategies; participation; questionnaires