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BackgroundVariability in prevalence estimation of intellectual disability has been attributed to heterogeneity in study settings, methodologies, and intellectual disability case definitions. Among studies based on national household survey data specifically, variability in prevalence estimation has partly been attributed to the level of specificity of the survey questions employed to determine the presence of intellectual disability. Specific aims & methodUsing standardised difference scoring, and ‘intellectual disability’ survey data from the 2007 Northern Ireland Survey on Activity Limitation and Disability (NISALD) (N=23,689) and the 2011 Northern Ireland Census (N=1,770,217) the following study had two aims. First, we aimed to demonstrate the effects of survey question specificity on intellectual disability prevalence estimation. Second, we aimed to produce reliable estimates of the geographic variation of intellectual disability within private households in Northern Ireland while also assessing the socio-demographic, health-related and disability characteristics of this population. FindingsPrevalence estimates generated using the more crudely classified intellectual disability Census data indicated a prevalence of 2% for the overall population, 3.8% for children aged between 0 and 15 years, and 1.5% for citizens aged 16 years or older. Intellectual disability prevalence estimates generated using the more explicitly defined 2007 NISALD data indicated a population prevalence of 0.5% for the overall population, 1.3% for children aged between 0 and 15 years, and 0.3% for citizens aged 16 years or older. The NISALD estimates were consistent with most recent international meta-analysis prevalence estimates. According to the NISALD data, the majority of those with an intellectual disability were male, lived outside Belfast, and experienced severe intellectual disability, with multiple comorbid health conditions. DiscussionThe current findings highlight the importance of survey question specificity in the estimation of intellectual disability prevalence and provide reliable prevalence estimates of intellectual disability in Northern Ireland. The findings also demonstrate the utility of administrative data for detecting and understanding intellectual disability, and inform recommendations on how to maximise use of future intellectual disability Census data.

Objectives: To understand the views of qualified medical practitioners regarding “reasonable adjustments” and the quality of the care and treatment provided to adults with intellectual disabilities when admitted to acute hospitals as inpatients. Methods: Semi‐structured interviews took place with 14 medical practitioners, seven from each of two acute hospitals, with a thematic analysis of the resulting data. Results: All 14 medical practitioners reported problems in the diagnosis and treatment of patients with intellectual disabilities. Most participants attributed these difficulties to communication problems and/or behaviours that, in the context of a hospital ward, were non‐conforming. However, a minority reported that, because they were likely to have multiple comorbid health conditions, patients with intellectual disabilities were more complex. In addition, half of all these respondents reported making little use of “reasonable adjustments” introduced to improve the quality of the care received by this group of patients. Conclusions: Medical practitioners should make better use of the “reasonable adjustments” introduced in the UK to address inequities in care and treatment received by patients with intellectual disabilities. However, training should also focus on the biomedical complexities often presented by these men and women.

BackgroundPeople with intellectual disabilities (IDs) die at younger ages than the general population, but nationally representative and internationally comparable mortality data about people with ID, quantifying the extent and pattern of the excess, have not previously been reported for England.MethodWe used data from the Clinical Practice Research Datalink database for April 2010 to March 2014 (CPRD GOLD September 2015). This source covered several hundred participating general practices comprising roughly 5% of the population of England in the period studied. General practitioner (GP) records identified people diagnosed by their GP as having ID. Linked national death certification data allowed us to derive corresponding mortality data for people with and without ID, overall and by cause.ResultsMortality rates for people with ID were significantly higher than for those without. Their all-cause standardised mortality ratio was 3.18. Their life expectancy at birth was 19.7 years lower than for people without ID. Circulatory and respiratory diseases and neoplasms were the three most common causes of death for them. Cerebrovascular disease, thrombophlebitis and pulmonary embolism all had standardised mortality ratios greater than 3 in people with ID. This has not been described before. Other potentially avoidable causes included epilepsy (3.9% of deaths), aspiration pneumonitis (3.6%) and colorectal cancer (2.4%). Avoidable mortality analysis showed a higher proportion of deaths from causes classified as amenable to good medical care but a lower proportion from preventable causes compared with people without ID. International comparison to areas for which data have been published in sufficient detail for calculation of directly standardised rates suggest England may have higher death rates for people with ID than areas in Canada and Finland, and lower death rates than Ireland or the State of Massachusetts in the USA.ConclusionsNational data about mortality in people with ID provides a basis for public health interventions. Linked data using GP records to identify people with ID could provide comprehensive population-based monitoring in England, unbiased by the circumstances of illnesses or death; to date information governance constraints have prevented this. However, GPs in England currently identify only around 0.5% of the population as having ID, suggesting that individuals with mild, non-syndromic ID are largely missed. Notably common causes of death suggest control of cardiovascular risk factors, epilepsy and dysphagia, management of thrombotic risks and colorectal screening are important areas for health promotion initiatives.