Participation in paediatric cancer studies: timing and approach to recruitment

BMC Research Notes

Elizabeth Milne²  Bruce K Armstrong¹  Helen D Bailey²  Tamika L Heiden² 

[1] Sydney School of Public Health, The University of Sydney, Queen Elizabeth II Research Institute D02, The University of Sydney, Sydney, NSW 2006, Australia;Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth WA 6872, Australia

关键词: Questionnaire;    Participation;    Study invitation;    Pediatric cancer;    Recruitment;   

Others  :  1142705
DOI  :  10.1186/1756-0500-6-191

 received in 2012-07-10, accepted in 2013-05-06,  发布年份 2013

【 摘 要 】

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.

【 授权许可】

   
2013 Heiden et al.; licensee BioMed Central Ltd.

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