An approach to identifying young children with developmental disabilities via primary care records [version 2; peer review: 2 approved, 1 approved with reservations]

Background: Preschool aged children with developmental disabilities frequently receive a diagnosis of an indicator of disability, such as developmental delay, some time before receiving a definitive diagnosis at school age, such as autism spectrum disorder. The absence of a definitive diagnosis potentially underestimates the need for support by families with young disabled children, also delaying the access of families to condition-specific information and support. Our aim was to develop a strategy to identify children with probable and potential developmental disabilities before the age of five in primary care records for a UK birth cohort, considering how the identification of only probable or potential developmental disability might influence prevalence estimates. Methods: As part of a study of the effects of caring for young children with developmental disabilities on mothers’ health and healthcare use, we developed a two-part strategy to identify: 1) children with conditions associated with significant disability and which can be diagnosed during the preschool period; and 2) children with diagnoses which could indicate potential disability, such as motor development disorder. The strategy, using Read codes, searched the electronic records of children in the Born in Bradford cohort with linked maternal and child sociodemographic information. The results were compared with national and Bradford prevalence estimates. Results: We identified 83 children with disability conditions and 394 with potential disability (44 children had a disability condition and an indicator of potential disability). Combined they produced a developmental disability prevalence of 490 per 10,000 which is above the UK estimate for developmental disabilities in children under five (468 per 10,000) and within the 419-505 per 10,000 prevalence estimated for Bradford (for children aged 0-18). Conclusions: When disability prevalence is estimated only using conditions diagnosed as developmental disabilities, most young children with developmental disabilities likely to be diagnosed at later ages will be missed.