ObjectivesTo investigate the prevalence of multimorbidity in adults with intellectual disabilities with and without Down syndrome.DesignLarge, population-based cross-sectional study.SettingThe geographical area of one Health Board, Scotland.ParticipantsAll adults (aged 16+ years) known to general practitioners to have intellectual disabilities and adults receiving services provided or paid by intellectual disabilities health or social work services. 1023/1562 potential participants took part (65.5%); 562 (54.9%) men and 461 (45.1%) women, aged 43.9 years (16–83 years). 186 had Down syndrome and 837 did not.Main outcome measuresThe prevalence of International Statistical Classification of Diseases, 10th revision, physical health conditions and multimorbidity detected at a comprehensive health assessment.ResultsThe mean number of physical health conditions/participant was 11.04, and 98.7% had multimorbidity. The most prevalent conditions are painful and/or disabling and, in some cases, life threatening. The five most prevalent were visual impairment, obesity, epilepsy, constipation and ataxic/gait disorders. The pattern of multimorbidity differs from that seen in the general population and is spread across the entire adult life course. The extent of multimorbidity in the adults with Down syndrome was similar to that of the adults without Down syndrome, while the prevalence of individual conditions differed.ConclusionsThis robustly designed study with a large population found an extremely high prevalence of multimorbidity in adults with intellectual disabilities across the entire adult life course. This increases complexity of medical management that secondary healthcare services and medical education are not yet geared towards, as these tend to focus on single conditions. This is in addition to complexity due to limitations in communication and understanding. As the physical conditions within their multimorbidity also differ from that seen in the older general population, urgent attention is needed to develop the care pathways and guidelines that are required to inform and so improve their healthcare.
Background There have been several past reports that adults with intellectual disabilities experience poor oral health (tooth loss, periodontal health and untreated dental caries). Loss of a functional dentition has serious consequences, including problems with chewing, swallowing, nutrition, speech, temporomandibular joint osteoarthritis and pain and systemic health conditions. Poor oral health is largely preventable through proactive oral care support. In recent years, social care provision for adults has changed, with deinstitutionalisation and home‐based personalised care now being the typical provision in high income countries. Hence, oral health inequalities might be reducing. However, there is limited recent evidence‐synthesis on the topic. We aimed to address this. Method PROSPERO registration number: CRD42018089880. We conducted a preferred reporting items for systematic reviews and meta‐analyses systematic review of publications since 2008. Four databases were searched with a clear search strategy, strict inclusion criteria for selection of papers, double scoring (two raters), systematic data extraction and quality appraisal of included papers. Results A total of 33/3958 retrieved articles were included, of which 14 were drawn from dental service users and 10 from Special Olympic athletes, therefore not necessarily being representative of the wider population with intellectual disabilities. Despite this limitation, adults with intellectual disabilities were still shown to experience poor oral health. High levels of poor oral hygiene and gingivitis were found, with many also affected by periodontitis and untreated dental decay. There is clear unmet need relating to both periodontal (gum) and tooth health, leading to tooth loss. Conclusions Despite reports in the past of poor oral health amongst adults with intellectual disabilities, and despite it being preventable, there remains a high burden of poor oral health. This highlights the need to raise awareness, and for polices on effective daily oral care, and appropriate service provision. The importance of oral health and its possible negative sequelae needs to be elevated amongst carers and professionals.
ObjectivesTo investigate mortality rates and causes in children and young people with intellectual disabilities.DesignRetrospective cohort; individual record linkage between Scotland’s annual pupil census and National Records of Scotland death register.SettingGeneral community.ParticipantsPupils receiving local authority-funded schooling in Scotland, 2008 to 2013, with an Additional Support Need due to intellectual disabilities, compared with other pupils.Main outcome measuresDeaths up to 2015: age of death, age-standardised mortality ratios (age-SMRs); causes of death including cause-specific age-SMRs; avoidable deaths as defined by the UK Office of National Statistics.Results18 278/947 922 (1.9%) pupils had intellectual disabilities. 106 died over 67 342 person-years (crude mortality rate=157/100 000 person-years), compared with 458 controls over 3 672 224 person-years (crude mortality rate=12/100 000 person-years). Age-SMR was 11.6 (95% CI 9.6 to 14.0); 16.6 (95% CI 12.2 to 22.6) for female pupils and 9.8 (95% CI 7.7 to 12.5) for male pupils. Most common main underlying causes were diseases of the nervous system, followed by congenital anomalies; most common all-contributing causes were diseases of the nervous system, followed by respiratory system; most common specific contributing causes were cerebral palsy, pneumonia, respiratory failure and epilepsy. For all contributing causes, SMR was 98.8 (95% CI 69.9 to 139.7) for congenital anomalies, 76.5 (95% CI 58.9 to 99.4) for nervous system, 63.7 (95% CI 37.0 to 109.7) for digestive system, 55.3 (95% CI 42.5 to 72.1) for respiratory system, 32.1 (95% CI 17.8 to 57.9) for endocrine and 14.8 (95% CI 8.9 to 24.5) for circulatory system. External causes accounted for 46% of control deaths, but the SMR for external-related deaths was still higher (3.6 (95% CI 2.2 to 5.8)) for pupils with intellectual disabilities. Deaths amenable to good care were common.ConclusionPupils with intellectual disabilities were much more likely to die than their peers, and had a different pattern of causes, including amenable deaths across a wide range of disease categories. Improvements are needed to reduce amenable deaths, for example, epilepsy-related and dysphagia, and to support families of children with life-limiting conditions.
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