Factors associated with the use of UK emergency services in children and young people with intellectual developmental disabilities

Abstract Background Children and young people (CYP) with intellectual developmental disabilities (IDD) experience substantial health needs and higher healthcare utilisation compared with the general paediatric population. However, factors affecting the emergency healthcare use among children with IDD of genetic aetiology remain poorly understood. This study aimed to examine demographic, socioeconomic, behavioural, genetic, and clinical factors of emergency service use among CYP with IDD in England. Methods This retrospective cohort study used linked administrative healthcare data from Hospital Episode Statistics (HES) emergency service records obtained from National Health Service (NHS) England. Participants were CYP aged between 4 and 15.5 years with confirmed pathogenic genetic variants associated with IDD identified via NHS medical genetic clinics. The outcome was the yearly emergency service use rate, calculated as the total number of lifetime emergency visits divided by age (years). Independent variables included demographic and socioeconomic factors, genetic characteristics, region of residence, adaptive functioning, behavioural and emotional adjustment, prosocial behaviour, general health status, and system-specific medical conditions. Primary caregivers completed questionnaires and provided information regarding the child’s medical history and demographic information. Results The average emergency attendance rate in this cohort was 0.73 visits per annum, which was much higher than that among children in the same age range from the general population. Emergency services were used more by younger IDD children with poorer adaptive functioning, more externalising and less prosocial behaviour, as well as those with complex multisystem conditions. Frequent attendance was associated with high rates of medical comorbidities especially seizures and respiratory problems. Regional differences were found with relatively higher usage in London and the North East of England. Attendance rates were not influenced by sex, ethnicity, socioeconomic deprivation, genetic variant type or inheritance status. Conclusions This novel study demonstrated emergency healthcare utilisation among CYP with IDD of known genetic aetiology in England was primarily associated with clinical complexity, functional impairment, and younger age rather than socioeconomic or genetic factors. Their vulnerability to multisystem morbidity as well as regional disparities highlight the need for improved coordinated care and targeted service planning to reduce emergency healthcare dependence among children with disabilities.