Who is our cohort: recruitment, representativeness, baseline risk and retention in the “Watch Me Grow” study?

BMC Pediatrics

Research Article

Rudi Črnčec¹  Bronwyn Overs¹  Emma Axelsson²  Valsamma Eapen²  Stewart Einfeld³  John Eastwood⁴  Katrina Williams⁵  Alexandra Hendry⁶  Bin Jalaludin⁷  Joseph Descallar⁸  Elisabeth Murphy⁹  Deborah Beasley⁹  Cheryl Dissanayake^1,10  Kate Short^1,11  Natalie Silove^1,12  Susan Woolfenden^1,13 

[1] Academic Unit of Child Psychiatry, South West Sydney Local Health District (AUCS), Sydney, Australia;School of Psychiatry & Ingham Institute, University of New South Wales, Sydney, Australia;Academic Unit of Child Psychiatry, South West Sydney Local Health District (AUCS), Sydney, Australia;School of Psychiatry & Ingham Institute, University of New South Wales, Sydney, Australia;Ingham Institute for Applied Medical Research, Liverpool, Australia;Centre for Disability Research and Policy, Brain & Mind Research Institute, University of Sydney, Sydney, Australia;Community Paediatrics, South Western Sydney Local Health District, Sydney, Australia;Ingham Institute for Applied Medical Research, Liverpool, Australia;Department of Paediatrics, University of Melbourne, Sydney, Australia;Developmental Medicine, Royal Children’s Hospital, Sydney, Australia;Murdoch Children’s Research Institute, Sydney, Australia;Early Years Research Group, Ingham Institute, Sydney South West Local Health District, Sydney, Australia;Epidemiology Group, Healthy People and Places Unit, South Western Sydney Local Health District, Sydney, Australia;Ingham Institute for Applied Medical Research, Liverpool, Australia;School of Public Health and Community Medicine, University of New South Wales, Sydney, Australia;Ingham Institute for Applied Medical Research, Liverpool, Australia;South Western Sydney Clinical School, University of New South Wales, Sydney, Australia;NSW Kids and Families (NSW Health), Sydney, Australia;Olga Tennison Autism Research Centre, La Trobe University, Melbourne, Australia;Speech Pathology Unit, Liverpool Hospital, Sydney, Australia;University of New South Wales, Sydney, Australia;Ingham Institute for Applied Medical Research, Liverpool, Australia;Sydney Children’s Hospitals Network, Sydney, Australia;Discipline of Paediatrics and Child Health, University of Sydney, Sydney, Australia;School of Psychiatry & Ingham Institute, University of New South Wales, Sydney, Australia;Sydney Children’s Hospitals Network, Sydney, Australia;University of New South Wales, Sydney, Australia;

关键词: Participation bias;    Recruitment;    Birth cohort;   

DOI  :  10.1186/s12887-016-0582-1

 received in 2014-10-14, accepted in 2016-03-14,  发布年份 2016

来源: Springer

【 摘 要 】

BackgroundThe “Watch Me Grow” (WMG) study examines the current developmental surveillance system in South West Sydney. This paper describes the establishment of the study birth cohort, including the recruitment processes, representativeness, follow-up and participants’ baseline risk for future developmental risk.MethodsNewborn infants and their parents were recruited from two public hospital postnatal wards and through child health nurses during the years 2011–2013. Data was obtained through a detailed participant questionnaire and linked with the participant’s electronic medical record (EMR). Representativeness was determined by Chi-square analyses of the available clinical, psychosocial and sociodemographic EMR data, comparing the WMG participants to eligible non-participants. Reasons for non-participation were also elicited. Participant characteristics were examined in six, 12, and 18-month follow-ups.ResultsThe number of infants recruited totalled 2,025, with 50 % of those approached agreeing to participate. Reasons for parents not participating included: lack of interest, being too busy, having plans to relocate, language barriers, participation in other research projects, and privacy concerns. The WMG cohort was broadly representative of the culturally diverse and socially disadvantaged local population from which it was sampled. Of the original 2025 participants enrolled at birth, participants with PEDS outcome data available at follow-up were: 792 (39 %) at six months, 649 (32 %) at 12 months, and 565 (28 %) at 18 months. Participants with greater psychosocial risk were less likely to have follow-up outcome data. Almost 40 % of infants in the baseline cohort were exposed to at least two risk factors known to be associated with developmental risk.ConclusionsThe WMG study birth cohort is a valuable resource for health services due to the inclusion of participants from vulnerable populations, despite there being challenges in being able to actively follow-up this population.

【 授权许可】

CC BY   
© Woolfenden et al. 2016