Cohort profile: The 'Children's Health in Care in Scotland' (CHiCS) study-a longitudinal dataset to compare health outcomes for care experienced children and general population children.

PURPOSE: The Children's Health in Care in Scotland Cohorts were set up to provide first population-wide evidence on the health outcomes of care experienced children (CEC) compared with children in the general population (CGP). To date, there are no data on how objective health outcomes, mortality and pregnancies for CEC are different from CGP in Scotland. PARTICIPANTS: The CEC cohort includes school-aged children who were on the 2009/2010 Scottish Government's Children Looked After Statistics (CLAS) return and on the 2009 Pupil Census (PC). The children in the general population cohort includes those who were on the 2009 PC and not on any of the CLAS returns between 1 April 2007 and 31 July 2016. FINDINGS TO DATE: Data on a variety of health outcomes, including mortality, prescriptions, hospitalisations, pregnancies, and Accident & Emergency attendances, were obtained for the period 1 August 2009 to 31 July 2016 for both cohorts. Data on socioeconomic status (SES) for both cohorts were available from the Birth Registrations and a small area deprivation measure was available from the PC. CEC have, on average, lower SES at birth and live in areas of higher deprivation compared with CGP. A higher proportion of CEC have recorded events across all health data sets, and they experienced higher average rates of mortality, prescriptions and hospitalisations during the study period. The reasons for contacting health services vary between cohorts. FUTURE PLANS: Age-standardised rates for the two cohorts by sex and area deprivation will be calculated to provide evidence on population-wide prevalence of main causes of death, reasons for hospitalisation and types of prescription. Event history analysis will be used on matched cohorts to investigate the impact of placement histories and socioeconomic factors on health.

Age at identification, prevalence and general health of children with autism: observational study of a whole country population.

OBJECTIVES: 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. DESIGN: Secondary analysis of Scotland's Census, 2011 data. Cross-sectional study. SETTING: General population of Scotland. PARTICIPANTS: All children (n=916 331) and young people (n=632 488) in Scotland. MAIN OUTCOME MEASURES: 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. RESULTS: 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). CONCLUSION: 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.

Prevalence of sensory impairments, physical and intellectual disabilities, and mental health in children and young people with self/proxy-reported autism: Observational study of a whole country population.

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.

Prevalence of long-term health conditions in adults with autism: observational study of a whole country population.

OBJECTIVES: To investigate the prevalence of comorbid mental health conditions and physical disabilities in a whole country population of adults aged 25+ with and without reported autism. DESIGN: Secondary analysis of Scotland's Census, 2011 data. Cross-sectional study. SETTING: General population. PARTICIPANTS: 94% of Scotland's population, including 6649/3 746 584 adults aged 25+ reported to have autism. MAIN OUTCOME MEASURES: Prevalence of six comorbidities: deafness or partial hearing loss, blindness or partial sight loss, intellectual disabilities, mental health conditions, physical disability and other condition; ORs (95% CI) of autism predicting these comorbidities, adjusted for age and gender; and OR for age and gender in predicting comorbidities within the population with reported autism. RESULTS: Comorbidities were common: deafness/hearing loss-14.1%; blindness/sight loss-12.1%; intellectual disabilities-29.4%; mental health conditions-33.0%; physical disability-24.0%; other condition-34.1%. Autism statistically predicted all of the conditions: OR 3.3 (95% CI 3.1 to 3.6) for deafness or partial hearing loss, OR 8.5 (95% CI 7.9 to 9.2) for blindness or partial sight loss, OR 94.6 (95% CI 89.4 to 100.0) for intellectual disabilities, OR 8.6 (95% CI 8.2 to 9.1) for mental health conditions, OR 6.2 (95% CI 5.8 to 6.6) for physical disability and OR 2.6 (95% CI 2.5 to 2.8) for other condition. Contrary to findings within the general population, female gender predicted all conditions within the population with reported autism, including intellectual disabilities (OR=1.4). CONCLUSIONS: Clinicians need heightened awareness of comorbidities in adults with autism to improve detection and suitable care, especially given the added complexity of assessment in this population and the fact that hearing and visual impairments may cause additional difficulties with reciprocal communication which are also a feature of autism; hence posing further challenges in assessment.

Prevalence and general health status of people with intellectual disabilities in Scotland: a total population study.

BACKGROUND: Prevalence of intellectual disabilities varies considerably between studies. People with intellectual disabilities experience health inequalities, but most studies comprise small or incomplete populations. We investigated in a whole country population the (1) prevalence of intellectual disabilities and (2) general health status compared with the general population. METHOD: Data were from Scotland's Census, 2011. We calculated the prevalence of intellectual disabilities, reported general health status of people with and without intellectual disabilities and the extent of health-related limitations to daily activities. We conducted logistic regressions to determine the ORs of intellectual disabilities predicting poor health and associations with age and gender. RESULTS: Of Scotland's 5 295 403 population, 26 349 (0.5%) had intellectual disabilities; 15 149 (57.5%) were males and 11 200 (42.5%) were females; 5234 (0.6%) were children/youth (0-15) and 21 115 (0.5%) were adults (16-75+ years). Identification of intellectual disabilities rises until age 5 years, with a further small rise by age 9 years. Children and adults with intellectual disabilities reported more poor health (47.9% and 40.3%) than the general population (2.1% and 13.8%) and were more limited in activities by their health. Intellectual disabilities had an OR of 43.2 (95% CI 40.8 to 45.7) in predicting poor health; the influence of increasing age on poor health was markedly interacted by presence of intellectual disabilities, likely to be due to a 'healthy survivor' effect within the intellectual disabilities population. CONCLUSION: People with intellectual disabilities have poorer general health than other people, especially children and young people. Accurate information on population prevalence and health status is essential to plan appropriate resources.

Prevalence of mental health conditions and relationship with general health in a whole-country population of people with intellectual disabilities compared with the general population.

BACKGROUND: There are no previous whole-country studies on mental health and relationships with general health in intellectual disability populations; study results vary. AIMS: To determine the prevalence of mental health conditions and relationships with general health in a total population with and without intellectual disabilities. METHOD: Ninety-four per cent completed Scotland's Census 2011. Data on intellectual disabilities, mental health and general health were extracted, and the association between them was investigated. RESULTS: A total of 26 349/5 295 403 (0.5%) had intellectual disabilities. In total, 12.8% children, 23.4% adults and 27.2% older adults had mental health conditions compared with 0.3, 5.3 and 4.5% of the general population. Intellectual disabilities predicted mental health conditions; odds ratio (OR)=7.1 (95% CI 6.8-7.3). General health was substantially poorer and associated with mental health conditions; fair health OR=1.8 (95% CI 1.7-1.9), bad/very bad health OR=4.2 (95% CI 3.9-4.6). CONCLUSIONS: These large-scale, whole-country study findings are important, given the previously stated lack of confidence in comparative prevalence results, and the need to plan services accordingly. DECLARATION OF INTEREST: None. COPYRIGHT AND USAGE: © The Royal College of Psychiatrists 2017. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) license.