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

Background
Adults with intellectual disabilities who display behaviours that challenge (BtC) are more prone to poor health.

Aims
This study seeks to evidence the long-term health outcomes for those who display BtC.

Method
We conducted a longitudinal cohort study of adults with intellectual disabilities aged ≥18 years in England, using data from the Clinical Practice Research Datalink Aurum (January 2003 to December 2023) linked to Hospital Episode Statistics and Office for National Statistics. Main outcome measures were annual health checks, general practitioner referrals, emergency visits, out-patient attendance, in-patient admissions and mortality.

Results
Among 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 annual health checks. A total of 72.5% of participants with BtC were receiving psychotropic medication(s). Adults with BtC had higher rates of mental health out-patient attendance (odds ratio: 1.42, 95% CI 1.33–1.52) and in-patient admissions (incidence rate ratio (IRR): 1.19, 95% CI 1.09–1.29), but consistently lower rates of physical health out-patient attendance (IRR = 0.81, 95% CI 0.78–0.84) and in-patient admissions (IRR = 0.77, 95% CI 0.74–0.79), after adjusting for demographic and clinical characteristics. BtC were not associated with mortality after adjustment for comorbidities (hazard ratio: 0.97, 95% CI 0.93–1.00).

Conclusions
This 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.