Developmental disability at school age and difficulty obtaining follow-up data

Lex W. Doyle, Peter J. Anderson, Alice Burnett, Catherine Callanan, Marion McDonald, Marie Hayes, Gillian Opie, Elizabeth Carse, Jeanie L.Y. Cheong, Victorian Infant Collaborative Study Group

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Abstract

BACKGROUND: The relationship of developmental disability rates with difficulty obtaining follow-up data is unclear. With this study, we aimed to determine if children who attended research follow-up assessments with more difficulty had more disability at school age, compared with those who attended with less difficulty, and to establish the relationship between follow-up and disability rates. METHODS: Two groups, comprising 219 consecutive survivors born at <28 weeks' gestation or at <1000 g birth weight in the state of Victoria, Australia, in 2005, and 218 term-born, normal birth weight controls were assessed at 8 years of age for neurodevelopmental disability (any of IQ <-1 SD, cerebral palsy, blindness, or deafness). Children were classified as either more or less difficult to get to attend by research nurses involved in the study. RESULTS: The follow-up rate was 87% for both groups. Overall, children who attended with more difficulty had higher rates of neurodevelopmental disability (42%; 19 of 45) than those who attended with less difficulty (20%; 66 of 328) (odds ratio: 3.09, 95% confidence interval: 1.58 to 6.01; P = .001). As the follow-up rate rose among the 3 individual hospitals involved in the assessments, so did the rate of neurodevelopmental disability (P = .025). CONCLUSIONS: Children who attend with more difficulty have higher rates of neurodevelopmental disability at school age than those who attend with less difficulty, and disability rates rise with higher follow-up rates. Rates of neurodevelopmental disability will be underestimated if researchers are not persistent enough to obtain high follow-up rates.

Original languageEnglish
Article numbere20173102
Number of pages7
JournalPediatrics
Volume141
Issue number2
DOIs
Publication statusPublished - 1 Feb 2018

Cite this

Doyle, L. W., Anderson, P. J., Burnett, A., Callanan, C., McDonald, M., Hayes, M., ... Victorian Infant Collaborative Study Group (2018). Developmental disability at school age and difficulty obtaining follow-up data. Pediatrics, 141(2), [e20173102]. https://doi.org/10.1542/peds.2017-3102