Participation in paediatric cancer studies: timing and approach to recruitment

BACKGROUND: Participation in epidemiological studies has fallen significantly over the past 30 years; this has been attributed to a busier lifestyle and longer working hours. In case–control studies, participation among cases is usually higher than among controls due to the personal relevance. In Australia, between 2003 and 2011, we conducted three national population-based case–control studies of risk factors for childhood cancers; brain tumors, acute leukemia and neuroblastoma and Wilms’ tumor. In this sub-study, we aimed to investigate factors that may have influenced study participation and completeness of survey completion. FINDINGS: The proportion of incident cases that were eligible to participate was lowest in the brain tumor study (Aus-CBT) (83.1%), as was the proportion of eligible families that consented (57%). The percentage of eligible cases that consented was highest in the leukemia study (Aus-ALL) (80.2%). The mode of invitation used was associated with families’ consent in each of the studies. Families invited in person, at clinic appointments, were more likely to consent than families invited by letter or phone. Timing of invitation following the child’s diagnosis differed among studies but, the likelihood of consent did not appear to be directly related to this. The return of questionnaires, completion of interview, and provision of DNA (blood sample) was highest in Aus-ALL (93%) and lowest in Aus-CBT (81%). CONCLUSIONS: Studies of childhood cancer, and possibly other childhood diseases, should arrange for the family to be invited in person and, where possible, by a doctor with whom they are familiar. Whilst telephone interviews are time consuming and costly, particularly for large studies, they should be preferred over questionnaires for obtaining complete data.