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

Drawing on linked NHS hospital records for 800 children, researchers found an average of 0.73 emergency visits per child per year, compared with a general population figure of 0.475 visits per annum for children under 15 reported by the Nuffield Trust. Neither attendance rate is corrected for repeat attendees, so the comparison reflects raw service use rather than distinct patients.

The study, part of the IMAGINE-ID programme, recruited 3407 UK participants largely through 23 NHS Regional Genetics Centres between 2015 and 2020, with follow-up between 2020 and 2025. All participants were over four years old at enrolment and had received standardised molecular genetic testing, with pathogenic variants classified according to American College of Medical Genetics and Genomics guidelines. For the emergency care analysis, the team linked caregiver-provided medical, social and mental health histories to Hospital Episode Statistics Accident and Emergency and Emergency Care Data Set records from NHS England, covering the period from January 2007 to April 2022 and capturing lifetime emergency visits from birth up to 15.5 years of age.

The 800 participants with available linked data were aged between 4 and 15.5 years at recruitment, with a mean age of 11.4 years, and 59 percent were male. Most carried copy number variants, 629 participants or 78.6 percent, while 171, or 21.4 percent, carried single nucleotide variants. Where parental genetic testing was available, 61.7 percent of variants were de novo and 38.3 percent were inherited. The researchers calculated an annualised emergency attendance rate for each child by dividing total lifetime emergency visits by age in years, a standardisation designed to allow fair comparison across developmental stages.

Age emerged as one of the strongest correlates. Emergency use rate was significantly negatively correlated with age, with a correlation coefficient of -0.237, and children under five in the cohort averaged 2.27 emergency visits per year. General population figures for children aged 0 to 4 years fall between 0.60 and 0.80 visits per annum, so the youngest children with genetic intellectual developmental disabilities attended roughly three times as often. Participants aged 5 to 15 years made between 0.50 and 1.07 visits per annum, against general population rates of 0.18 to 0.25 for the equivalent age band. In regression models, each one-unit increase in age was associated with a decrease of 0.02 visits per annum.

Adaptive functioning and behaviour also mattered. The cohort’s mean General Adaptive Composite score on the Adaptive Behaviour Assessment System 3 was 63.5, placing the group in the Extremely Low range of daily adaptive ability, and lower scores were significantly associated with more frequent emergency use, an association that held when controlling for age and gender. On the Strengths and Difficulties Questionnaire, the cohort’s mean total difficulties score of 20.3 fell in the Very High band, and higher total difficulties and hyperactivity scores were linked to higher attendance rates independent of age and gender. Prosocial behaviour scores averaged 5.2, in the Very Low band, and lower prosocial scores were associated with more emergency use; in regression models, each one-unit increase in prosocial score slightly decreased emergency service usage.

Physical health status dominated the picture. Children whose caregivers rated their general health as Very Bad made 1.6 visits per annum, more than three times the 0.5 visits per annum seen among those rated Very Good. Specific system-level conditions were each associated with significantly higher emergency use, including seizures, chest or respiratory problems, cardiac conditions, gastrointestinal problems, endocrine or hormonal disorders, and musculoskeletal problems, with seizures and respiratory problems showing the largest effect sizes. Multisystem morbidity was common, and the more body systems involved, the greater the emergency utilisation, with multimorbidity explaining a substantial share of the variation in attendance rates.

Strikingly, several factors often assumed to shape healthcare access showed no independent association. Attendance rates did not differ by sex, with boys at 0.73 and girls at 0.74 visits per annum, by ethnicity, or by area-level deprivation measured through Index of Multiple Deprivation deciles. Genetic characteristics were equally uninformative: rates were statistically indistinguishable between children with copy number variants and those with single nucleotide variants, and between those with de novo variants and those with inherited familial variants. The authors conclude that within this clinically complex cohort, disability-related health needs appear to overshadow socioeconomic and genetic factors in driving emergency demand.

Geography did leave a mark. Families living in London and the North East of England showed significantly higher emergency use than those in other regions, independent of individual-level factors, and regression models confirmed higher attendance in London compared with the East Midlands and East of England. The pattern mirrors general population trends, with a large English birth cohort previously reporting the highest emergency attendance rates in the North East, at 916 per 1,000 child-years, and London, at 876 per 1,000 child-years. However, after Benjamini-Hochberg correction for multiple comparisons, the regional differences in this cohort were no longer statistically significant, a caveat the researchers acknowledge. They suggest regional service configuration, primary care access and population health profiles may shape these macro-level patterns.

The authors are careful about what the data can and cannot show. Because the NHS emergency dataset spans participants’ full lifetime histories while family surveys were administered at varying time points, strict temporal precedence between survey responses and individual emergency presentations cannot be established, so the findings must be interpreted as cross-sectional associations rather than causal timelines. Reverse causality remains possible, since frequent emergency crises could themselves contribute to poorer neurobehavioural functioning and greater carer burden. Other limitations include missing data, with only 56.4 percent of the 800 having adaptive functioning scores and 58 percent completing the medical questionnaire, reliance on caregiver-reported medical history, no information on reasons for attendance, and no capture of emergency care outside England. The data window also overlaps the COVID-19 pandemic, which suppressed paediatric emergency use across England, though most of the lifetime data predates it.

Even so, the study is the first to examine accident and emergency attendance in a nationally recruited cohort of children with intellectual developmental disabilities of genetic aetiology, and its implications point toward service design rather than blame. The authors argue that emergency utilisation in this population should not be read as inappropriate use but as a potential indicator of unmet need, noting that seizures and chest problems often involve rapid escalations where emergency attendance is clinically appropriate. Their proposed priorities include proactive management of seizures and multisystem conditions, electronic alerts within emergency care datasets to flag high-frequency attenders, standardised health checks following genetic diagnosis, better training for professionals, shared digital emergency care plans, mental health screening, given that up to half the cohort had associated neurodevelopmental disorders such as autism or attention deficit hyperactivity disorder, and stronger support for caregivers of children with very low adaptive functioning. Targeted, integrated and regionally responsive strategies, they conclude, are needed to reduce emergency reliance and promote equitable outcomes for these children.

Subject of Research: Emergency service use among children and young people with genetically confirmed intellectual developmental disabilities in England

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

Article References: Lee, I. O., Wolstencroft, J., Housby, H., van den Bree, M. B. M., Chawner, S. J. R. A., Hall, J., Owen, M. J., IMAGINE ID Consortium, Skuse, D. H., Wolstencroft, J., Lee, I. O., Chawner, S., Hall, J., Hope-Bell, J., Owen, M. J., van den Bree, M., Raymond, F. L., Srinivasan, R., & Skuse, D. H. (2026). Factors associated with the use of UK emergency services in children and young people with intellectual developmental disabilities. BMC Medicine, 24(1), Article 595. https://doi.org/10.1186/s12916-026-05277-x

Image Credits: AI Generated

DOI: 10.1186/s12916-026-05277-x

Keywords: intellectual developmental disabilities, emergency care, Hospital Episode Statistics, IMAGINE-ID, genetic variants, multimorbidity, adaptive functioning, health inequalities, NHS England, paediatrics, regional variation, BMC Medicine