Nature and prevalence of long-term conditions in people with intellectual disability:retrospective longitudinal population-based study

Abstract

OBJECTIVE: Explore the nature and prevalence of long-term conditions in individuals with intellectual disability. DESIGN: Retrospective longitudinal population-based study. SETTING: Primary and secondary care data across the population of Wales with the Secure Anonymised Information Linkage (SAIL) Databank. PARTICIPANTS: 14 323 individuals were identified during the study date period 1 January 2000 to 31 December 2021 using the following inclusion criteria: 18 or older, alive at the cohort start date, a resident of Wales, with a primary care registration at a SAIL providing general practice with available records and a recorded diagnosis of intellectual disability. Once individuals were identified, health records were observed from birth. RESULTS: 13 069 individuals had a recorded diagnosis of intellectual disability and at least one long-term condition, reflecting 91.25% of the population. Demographic data from the SAIL dataset reveal that the study population is predominantly White, with low levels of representation of non-White ethnic groups. In the cohort, a larger proportion of patients live in the most deprived areas of Wales (22.30%), with fewer individuals in less deprived categories. Mental illness was identified as the most prevalent of the identified long-term conditions, whereby 30.91% of the population had a recorded diagnosis of a mental illness which was chronic. For many common conditions, including epilepsy, thyroid disorders, upper gastrointestinal disorders, chronic kidney disease and diabetes, there was an overall trend of higher prevalence rates in the intellectual disability cohort when compared with the general population. The prevalence of hypertension was lower in individuals with intellectual disability. Chronic constipation, chronic diarrhoea and insomnia were examples of long-term conditions added as relevant to individuals with intellectual disability. Notable differences in the distribution of long-term conditions were observed when comparing across sex and age groups. The number of long-term conditions increases with age. Conditions which may usually be expected to emerge later in life are present in younger age groups, such as diabetes, hypertension and chronic arthritis. When hospital episodes were analysed, epilepsy, diabetes, chronic airway disease and mental illness were commonly treated conditions during hospital admission across both sexes. Conditions which were less prevalent in the intellectual disability cohort, but which were treated during ≥6% of total hospital admissions include cancer, cardiac arrhythmias and cerebral palsy. CONCLUSIONS: This study establishes a range of 40 relevant long-term conditions for people with intellectual disability through an iterative process, which included a review of the available literature and a series of discussions with a Professional Advisory Panel and Patient and Public Involvement groups of this research project. The findings of the study reinforce the high prevalence and early emergence of long-term conditions in the intellectual disability cohort. It also demonstrates the difference in the range of conditions when compared with the general population. There were differences in long-term conditions when separated by sex and age. Long-term conditions which commonly require treatment in hospitals were also revealed. Further work is required to translate the findings of this study into actionable insights. Clusters of multiple long-term conditions, trajectories, outcomes and risk factors should be explored to optimise the understanding and longitudinal care of individuals with intellectual disabilities and long-term conditions.