Clinical complexity linked to emergency use in children with genetic IDD

Researchers conducted a retrospective cohort study using linked study and NHS Hospital Episode Statistics emergency-care records for participants in the IMAGINE-ID cohort. The 3,407 children and young people were recruited through UK regional genetics services; the analysis included those aged 4 to 15.5 years with pathogenic genetic variants associated with intellectual developmental disability. The outcome was lifetime emergency visits divided by age, expressed as an annual attendance rate. Caregiver questionnaires and clinical data provided information on demographic, behavioural, functional and medical factors.

The average rate was 0.73 emergency attendances per year, reported as higher than in children of the same age in the general population. Higher use was associated with younger age, poorer adaptive functioning, more externalising and less prosocial behaviour, and complex multisystem conditions. Seizures and respiratory problems were among the comorbidities associated with frequent attendance. Rates also varied by region, with relatively higher use in London and the North East. Sex, ethnicity, area deprivation, genetic variant type and inheritance status were not associated with attendance rates.

The findings identify clinical complexity and functional impairment as correlates of emergency use in this genetically defined cohort, and may inform service planning. The study is observational, so it cannot establish causes of attendance or show that a particular care intervention would reduce it; the reported rate may not generalise to all children with intellectual developmental disabilities.