Who is our cohort: recruitment, representativeness, baseline risk and retention in the "Watch Me Grow" study?
journal contributionposted on 2022-03-29, 22:45 authored by S Woolfenden, V Eapen, E Axelsson, A Hendry, B Jalaludin, Cheryl DissanayakeCheryl Dissanayake, B Overs, J Descallar, J Eastwood, S Einfeld, N Silove, K Short, D Beasley, R Crncec, E Murphy, K Williams
Background: The "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. Methods: Newborn 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. Results: The 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. Conclusions: The 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.
This study (APP 1013690) was funded by the NH&MRC in Australia, through a partnership grant with the New South Wales Department of Health, Kids and Families and in-kind support from University of New South Wales, La Trobe University, South Western Sydney Local Health District and Sydney Children's Hospital Network.
Rights Statement© 2016 Woolfenden et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Science & TechnologyLife Sciences & BiomedicinePediatricsParticipation biasRecruitmentBirth cohortAUSTRALIAN CHILDRENYOUNG-CHILDRENHEALTH-STATUSBIRTH COHORTCAREPARTICIPATIONPREVALENCEGRADIENTSBARRIERSINFANTSDevelopmental DisabilitiesElectronic Health RecordsFemaleFollow-Up StudiesHumansInfantInfant, NewbornMaleNew South WalesPatient SelectionRefusal to ParticipateRisk FactorsSelection BiasSurveys and Questionnaires“Watch Me Grow” study group