Persistent health inequalities over 20 years among adults with intellectual disabilities who display behaviours that challenge: Evidence from English primary care records

BackgroundAdults with intellectual disabilities who display behaviours that challenge (BtC) are more prone to poor health. This study seeks to evidence the long-term health outcomes for this population. MethodsWe conducted a longitudinal cohort study of adults with intellectual disabilities aged 18+ years in England using data from Clinical Practice Research Datalink Aurum (01/2003-12/2023) linked to Hospital Episode Statistics and Office for National Statistics. Main outcome measures were Annual Health Checks (AHCs), GP referrals, emergency visits, outpatient attendance, inpatient admissions, and mortality. ResultsAmong 83,166 adults with intellectual disabilities (mean age 38.6 years), 18.5% had a record of BtC with similar sociodemographic distributions to those without BtC but higher rates of physical and mental health comorbidities and uptake of AHCs. 72.5% of participants with BtC were receiving psychotropic medication(s). Adults with BtC had higher rates of mental health outpatient attendance (OR: 1.42, 95% CI: 1.33 to 1.52) and inpatient admissions (IRR: 1.19, 95% CI: 1.09 to 1.29) but consistently lower rates of physical health outpatient attendance (IRR: 0.81, 95% CI: 0.78 to 0.84) and inpatient admissions (IRR: 0.77, 95% CI: 0.74 to 0.79), after adjusting for demographic and clinical characteristics. BtC was not associated with mortality after adjustment for comorbidities (HR: 0.97, 95% CI: 0.93 to 1.00). ConclusionThis longitudinal study not only corroborated the markedly elevated burden of physical and mental health comorbidities among individuals displaying BtC but also indicated that repeated efforts to improve health outcomes have yielded minimal measurable benefit over time. The apparent absence of progress is likely underpinned by a combination of insufficiently effective or poorly tailored interventions and wider systemic constraints that limit the capacity of services to respond to the complex needs of this population.