Reported childhood prevalence of autism varies considerably between studies and over time, and general health status has been little investigated. We aimed to investigate contemporary prevalence of reported autism by age, and general health status of children/young people with and without autism.Secondary analysis of Scotland's Census, 2011 data. Cross-sectional study.General population of Scotland.All children (n=916 331) and young people (n=632 488) in Scotland.Number (%) of children/young people reported to have autism and their general health status; prevalence of autism; prevalence of poor health (fair, bad and very bad health); odds ratios (95% confidence intervals) of autism predicting poor health, adjusted for age and gender and OR for age and gender in predicting poor health within the population with reported autism.Autism was reported for 17 348/916 331 (1.9%) children aged 0-15, and 7715/632 488 (1.2%) young people aged 16-24. The rate increased to age 11 in boys and age 10 in girls, reflecting age at diagnosis. Prevalence was 2.8% at age 10 (4.4% for boys; 1.1% for girls), and 2.9% at age 11 (4.5% for boys; 1.1% for girls). 22.0% of children and 25.5% of young people with autism reported poor health, compared with 2.0% and 4.4% without autism. Autism had OR=11.3 (11.0 to 11.7) in predicting poor health. Autistic females had poorer health than autistic males, OR=1.6 (1.5 to 1.8).Accurate information on the proportion of autistic children and their health status is essential plan appropriate prevention and intervention measures and provide resources for those who may put demand on services designed for autistic people.
Abstract Objectives To investigate mortality rates and associated factors, and avoidable mortality, in children/young people with intellectual disabilities. Design Retrospective cohort; individual record-linked data between Scotland’s 2011 Census to 9.5 years of National Records for Scotland death certification data. Setting General community. Participants Children and young people with intellectual disabilities living in Scotland aged 5-24 years, and an age matched comparison group. Main outcome measures Deaths up to 2020: age of death, age-standardised mortality ratios (age-SMRs); causes of death including cause-specific age-SMRs/sex-SMRs; and avoidable deaths. Results Death occurred in 260/ 7,247 (3.6%) children/young people with intellectual disabilities (crude mortality rate=388/100,000 person years), and 528/156,439 (0.3%) children/young people without intellectual disabilities (crude mortality rate=36/100,000 person years). SMR for children/young people with, versus those without, intellectual disabilities were 10.7 for all causes (95% confidence interval (CI)=9.47-12.1), 5.17 for avoidable death (CI=4.19-6.37), 2.3 for preventable death (1.6-3.2), and 16.1 for treatable death (CI=12.5-20.8). SMRs were highest for children (27.4, CI=20.6-36.3) aged 5-9 years, and lowest for young people (6.6, CI=5.1-8.6) aged 20-24 years. SMRs were higher in more affluent neighbourhoods. Crude mortality incidences were higher for the children/young people with intellectual disabilities for most ICD-10 chapters. The most common underlying avoidable causes of mortality for children/young people with intellectual disabilities were epilepsy, aspiration/reflux/choking and respiratory infection, and for children/young people without intellectual disabilities, were suicide, accidental drug-related deaths and car accidents. Conclusion Children with intellectual disabilities had significantly higher rates of all cause, avoidable, treatable, and preventable mortality than their peers. The largest differences were for treatable mortality, particularly at ages 5-9 years. Interventions to improve health-care to reduce treatable mortality should be a priority for children/young people with intellectual disabilities. Examples include improved epilepsy management and risk assessments, and co-ordinated multi-disciplinary actions to reduce aspiration/reflux/choking and respiratory infection. This is necessary across all neighbourhoods. Strengths and limitations of this study Novel use of Census records and record linkage to death records to study mortality in a total population cohort of children and young people with intellectual disabilities. Due to the use of a whole country population, these results are well-powered and generalisable. Despite comprising a whole country population, our study was not large enough to delineate cause-specific mortality ratios by sex. This study was limited by lack of demographic and clinical diagnostic information, including the severity or cause of intellectual disabilities. Reliance on death certificate data is limited by inconsistencies in reporting of cause of death.
Abstract Background Conditions that should be sufficiently managed in primary health care are collectively known as Ambulatory Care Sensitive Conditions (ACSC). The rate of unplanned hospital admissions for ACSC can be regarded as a proxy indicator of how well the primary care system works for a population of interest. We investigate such rates in Scotland, focusing on adults with Intellectual Disabilities (ID) and contrasting them with adults without ID. Method A population-based retrospective cohort data linkage study of adult respondents to Scotland’s 2011 Census. Self- or proxy-reported ID status from the Census was linked to hospital admissions data and deaths data. The cohort was followed until the end of 2019. Results After adjusting for different ACSC prevalence in ID and non-ID cohorts, we did not find evidence of there being a higher risk of unplanned ACSC hospitalisation among people with ID. COPD, seizures and epilepsy, influenza and pneumonia were responsible for half of ACSC hospitalisations, regardless of ID status. However, adults with ID had a higher risk of dying due to ACSC than adults without ID. Conclusions We conclude that overall, the primary care system in Scotland appears to be similarly effective for adults with ID than for adults without ID. However, the higher risk of dying from ACSC among people with ID needs further research.
This study investigated the comorbid conditions in a whole country population of children/young people aged 0–24 years with and without autism. Data were drawn from Scotland's Census 2011. We calculated the percentage with autism, their extent of comorbid conditions, odds ratio (with 95% confidence intervals) of autism predicting comorbidities, adjusted for age and gender, and odds ratio for age and gender predicting comorbidities within the cohort with autism. A total of 25,063/1,548,819 (1.6%) had autism: 19,880 (79.3%) males and 5183 (20.7%) females. Autism had an odds ratio of 5.4 (5.1–5.6) for predicting deafness/partial hearing loss, odds ratio of 8.9 (8.1–9.7) for blindness/partial sight loss, odds ratio of 49.7 (38.1–64.9) for intellectual disabilities, odds ratio of 15.7 (13.4–18.5) for mental health conditions, odds ratio of 15.8 (14.1–17.8) for physical disability and odds ratio of 3.9 (3.8–4.0) for other conditions. Females with autism were more likely to have each additional condition than males, including intellectual disabilities, suggesting they may have more severe autism than males and adding evidence that autism may be currently underdiagnosed in more intellectually able females. These conditions are disabling and have a significant impact on long-term quality of life; their coexistence with autism adds extra complexity. It is important to raise clinicians' awareness of this extent of comorbidity, and to have accurate prevalence data to plan prevention and intervention measures, and to follow health inequality trends.
Objective: To provide contemporary data on cancer mortality rates within the context of incidence in the population with intellectual disabilities. Methods: Scotland's 2011 Census was used to identify adults with intellectual disabilities and controls with records linked to the Scottish Cancer Registry and death certificate data (March 2011-December 2019). The control cohort without intellectual disabilities and/or autism were used for indirect standardisation and calculation of Crude Incident Rates/Crude Mortality Rates (CIR/CMR), and age-sex Standardized Incident Rate Ratios/ Standardized Mortality Ratios (SIR/SMR), with 95% Confidence Intervals (CI). Results: Adults with intellectual disabilities were most likely diagnosed cancers of digestive, specifically colorectal (14.2%), lung (9.3%), breast (female 22.9%), body of the uterus (female 9.3%) and male genital organs (male 17.6%). Higher incident cancers included metastatic cancer of unknown primary origin (female SIR=1.70, male SIR=2.08), body of uterus (female SIR=1.63), ovarian (female SIR=1.59), kidney (female SIR=1.85), and testicular (male SIR=2.49). SMRs were higher, regardless of a higher, similar, or lower incidence (female SMR=1.34, male SMR=1.07). Excess mortality risk was found for colorectal (male SMR=1.59), kidney (female SMR=2.85u), female genital organs (ovarian SMR=2.86u, body of uterus SMR=2.11), breast (female SMR=1.58), and metastatic cancer of unknown primary origin (female SMR=2.50u, male SMR=2.84). Conclusions: Adults with intellectual disabilities were more likely to die of cancer than the general population. Reasons for this may include later presentation/diagnosis (so poorer outcomes), poorer treatment/compliance, or both. Accessible public health approaches are important for people with intellectual disabilities, and healthcare professionals need to be aware of the different cancer experiences faced by this population.
Objectives To investigate mortality rates and associated factors, and avoidable mortality in children/young people with intellectual disabilities. Design Retrospective cohort; individual record-linked data between Scotland’s 2011 Census and 9.5 years of National Records for Scotland death certification data. Setting General community. Participants Children and young people with intellectual disabilities living in Scotland aged 5–24 years, and an age-matched comparison group. Main outcome measures Deaths up to 2020: age of death, age-standardised mortality ratios (age-SMRs); causes of death including cause-specific age-SMRs/sex-SMRs; and avoidable deaths. Results Death occurred in 260/7247 (3.6%) children/young people with intellectual disabilities (crude mortality rate=388/100 000 person-years) and 528/156 439 (0.3%) children/young people without intellectual disabilities (crude mortality rate=36/100 000 person-years). SMRs for children/young people with versus those without intellectual disabilities were 10.7 for all causes (95% CI 9.47 to 12.1), 5.17 for avoidable death (95% CI 4.19 to 6.37), 2.3 for preventable death (95% CI 1.6 to 3.2) and 16.1 for treatable death (95% CI 12.5 to 20.8). SMRs were highest for children (27.4, 95% CI 20.6 to 36.3) aged 5–9 years, and lowest for young people (6.6, 95% CI 5.1 to 8.6) aged 20–24 years. SMRs were higher in more affluent neighbourhoods. Crude mortality incidences were higher for the children/young people with intellectual disabilities for most International Statistical Classification of Diseases and Related Health Problems, 10th Revision chapters. The most common underlying avoidable causes of mortality for children/young people with intellectual disabilities were epilepsy, aspiration/reflux/choking and respiratory infection, and for children/young people without intellectual disabilities were suicide, accidental drug-related deaths and car accidents. Conclusion Children with intellectual disabilities had significantly higher rates of all-cause, avoidable, treatable and preventable mortality than their peers. The largest differences were for treatable mortality, particularly at ages 5–9 years. Interventions to improve healthcare to reduce treatable mortality should be a priority for children/young people with intellectual disabilities. Examples include improved epilepsy management and risk assessments, and coordinated multidisciplinary actions to reduce aspiration/reflux/choking and respiratory infection. This is necessary across all neighbourhoods.
Aim: Little is known about self-rated health status and demographic factors of people with autism in whole country populations. For the populations with and without autism in the whole of Scotland, this study investigated: self-rated general health status, demographic factors, and the prevalence of self-reported mental health conditions and other disabilities . Method: We analysed Scotland’s Census 2011 self-reported data about people with and without autism, and generated descriptive statistics. Results: 31,712 (0 .6%) of all people in Scotland(n=5,295,403) stated they had autism. There were 17,348(54.7%) children aged 0-15 and 14,364 (45.3%) adults aged 16 and over with autism. Very good or good health was described for 78.1% of children and 64.7% of adults with autism, and for 98.1% of children and 79.0% of adults without autism. 7.6% of children and 23.6% of adults with autism had an additional mental health condition (not including intellectual disabilities) compared with 0.2 % of children and 5 .2% of adults without autism.Other disabilities were also more common in people with autism. Conclusions: Health is poorer for people with autism than for the population without autism.
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