33 research outputs found
Developing better information about the health and health care of people with developmental disabilities in Scotland
Introduction: Neurodevelopmental disorders are a group of disorders that manifest early in development, and include intellectual disabilities and autism, among others. Intellectual disabilities refer to impairments in intellectual functioning (an intelligence quotient <70), together with deficits in adaptive functioning (need for support for daily personal independence and social functioning), with onset during the developmental period. Autism is characterised by persistent deficits in social communication and social interactions across multiple contexts, and restricted, repetitive patterns of behaviour, interests or activities, with onset of these symptoms in the early developmental period. People with intellectual disabilities and people with autism are thought to experience high levels of physical and mental health problems and earlier mortality than other people on average. Yet, there is a dearth of empirical evidence about the health of people with intellectual disabilities and people with autism which presents a barrier to understanding the complex factors that produce differential health outcomes. Ensuring adults with intellectual disabilities or autism live not only longer but healthier lives is a priority for the World Health Organisation and the Scottish Government.
Methods: The portfolio of publications (n=15) presented in this mixed methods PhD thesis, represents a selection of my peer reviewed publications in international scientific journals since 2015. I [Laura Hughes-McCormack] am the lead author on 4 of these publications and co-author on 11 publications (including being second author on 8 of these) which were prepared from research I undertook within the Scottish Learning Disabilities Observatory (SLDO) at the Institute of Health and Wellbeing, University of Glasgow. This research programme was funded by the Scottish Government in 2014 to provide evidence on the health of people with intellectual disabilities and autism in Scotland, and thus to inform the development of public policy. The research presented includes systematic reviews, quantitative research, data linkage research, and is presented in three themes throughout this thesis, as follows. Theme I. Health of people with intellectual disabilities and autism; seven of the nine quantitative studies presented under this theme/section analysed data from the Scottish Census, relating to people with intellectual disabilities or autism from 94% of the Scottish population (n=5,269,054) who responded to the Census in 2011. Two further studies (a quantitative study and a systematic review study) are reported, which investigated sedentary behaviour and oral health. Theme II. Health care of people with intellectual disabilities and Down syndrome; to quantify the management of long-term conditions, data for a population-based cohort of people with intellectual disabilities (n=721) was compared using an established evidence-based approach to measuring the quality of primary health care for all people without intellectual disabilities (n=764,672) in the largest health board in Scotland, throughout 2007-2010. A further systematic review study investigated hospital admissions for physical health conditions in adults with intellectual disabilities. Theme III. Survival/ death of people with intellectual disabilities and Down syndrome; two systematic reviews are reported, investigating deaths in people with intellectual disabilities and people with Down syndrome, and a further data linkage study which investigated birth and death rates and hospitalisations (throughout a 25-year period) among children/young people with Down syndrome in Scotland. Each theme includes a clear overview of the background/ rationale, methodology, results and impact of this body of work in relation to the development of better information on health and health care of people with intellectual disabilities and autism in Scotland.
Results: Theme I: Health of people with intellectual disabilities and autism: Findings of the Scottish Census 2011 studies (I-VII), show that poor health was more common for people with intellectual disabilities (odds of 43 in statistically predicting poor general health) and they were seven times more likely to report a current mental health condition than people without intellectual disabilities. Autism had odds of 11.3 in predicting poor general health in children and young people, and odds of 7.5 in adults. Comorbidities were found to be common among people with autism. Other studies presented under this theme (VIII, IX) show adults with intellectual disabilities have higher levels, and different correlates, of sedentary behaviour and poorer oral health.
Theme II: Health care of people with intellectual disabilities and Down syndrome: Findings from two studies (X, XI) show, people with intellectual disabilities were receiving lower quality health care compared to other people across all long‐term conditions investigated on 38/57 (66.7%) quality indicators. A follow up study, comparing baseline data to data in 2014 found adults with intellectual disabilities still had a lower proportion of indicators met than the general population; but by 2014, the healthcare inequality gap had reduced compared with 2007-10. A systematic review (XII), further investigating the quality of health care of people with intellectual disabilities, found people with intellectual disabilities were admitted to hospital more frequently than the general population for physical conditions which if managed effectively at the primary care level, should not lead to hospital admission, although evidence is limited.
Theme III: Survival/ death of people with intellectual disabilities and Down syndrome: Findings from the two systematic reviews (XIII, XIV) found mortality rates are higher in (1) the intellectual disabilities population and (2) the Down syndrome population, compared with the general population. For the intellectual disabilities’ population, an average age of death of 20 years lower was found compared to the general population. For the Down syndrome population, compared with the general population, an average age of death of 28 years lower was found although survival rates have improved over time. Patterns of cause of death were different for people with intellectual disabilities and people with Down syndrome compared to the general population. The data linkage study (XV) found the incidence of Down syndrome live-births was 1.0/1,000 births over the last 25 years. More children and young people with Down syndrome died (n=92; 7.4%) over the 25-year period compared to controls (n=23; 0.4%); that is 18.5 times more. There was increased risk of hospitalisation as more of the Down syndrome group had at least one admission (1,105 [89.5%] versus 3,305 [53.5%]; adjusted HR=1.84 [1.68, 2.01]). Re-admissions, emergency admissions and length of stay were also higher for the Down syndrome group.
Conclusions: This thesis has presented for each of the three inter-related themes, a range of my peer reviewed publications from international journals. A previous dearth of empirical evidence about the health and health care of people with intellectual disabilities and people with autism has presented barriers to understanding the complex factors that produce differential health outcomes. The research presented in this thesis has provided robust evidence on the extent of poor health, health care, and premature mortality among people with intellectual disabilities, and people with autism which has not previously been quantified in research. This evidence has led to shaping Scottish policy and practice to support the needs of people with intellectual disabilities, for example, the most recent learning disabilities strategy in Scotland, The Keys to Life, updated in 2019, includes input from my research
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
Age at identification, prevalence and general health of children with autism: observational study of a whole country population
No abstract available
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
The relative influence of intellectual disabilities and autism on mental and general health in Scotland: a cross-sectional study of a whole country of 5.3 million children and adults
Objectives: To determine the relative extent that autism and intellectual disabilities are independently associated with poor mental and general health, in children and adults.
Design: Cross-sectional study. For Scotland’s population, logistic regressions investigated odds of intellectual disabilities and autism predicting mental health conditions, and poor general health, adjusted for age and gender.
Participants: 1 548 819 children/youth aged 0-24 years, and 3 746 584 adults aged more than 25 years, of whom 9396/1 548 819 children/youth had intellectual disabilities (0.6%), 25 063/1 548 819 children/youth had autism (1.6%); and 16 953/3 746 584 adults had intellectual disabilities (0.5%), 6649/3 746 584 adults had autism (0.2%). These figures are based on self-report.
Main outcome measures: Self-reported general health status and mental health.
Results: In children/youth, intellectual disabilities (OR 7.04, 95% CI 6.30 to 7.87) and autism (OR 25.08, 95% CI 23.08 to 27.32) both independently predicted mental health conditions. In adults, intellectual disabilities (OR 3.50, 95% CI 3.20 to 3.84) and autism (OR 5.30, 95% CI 4.80 to 5.85) both independently predicted mental health conditions. In children/youth, intellectual disabilities (OR 18.34, 95% CI 17.17 to 19.58) and autism (OR 8.40, 95% CI 8.02 to 8.80) both independently predicted poor general health. In adults, intellectual disabilities (OR 7.54, 95% CI 7.02 to 8.10) and autism (OR 4.46, 95% CI 4.06 to 4.89) both independently predicted poor general health.
Conclusions: Both intellectual disabilities and autism independently predict poor health, intellectual disabilities more so for general health and autism more so for mental health. Intellectual disabilities and autism are not uncommon, and due to their associated poor health, sufficient services/supports are needed. This is not just due to coexistence of these conditions or just to having intellectual disabilities, as the population with autism is independently associated with substantial health inequalities compared with the general population, across the entire life course
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—17.5%; blindness/sight loss—12.1%; intellectual disabilities—29.4%; mental health conditions—33.0%; physical disability—30.7%; 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 9.0) 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 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—17.5%; blindness/sight loss—12.1%; intellectual disabilities—29.4%; mental health conditions—33.0%; physical disability—30.7%; 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 9.0) 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
The relationship between moral development, distorted cognitions and social problem solving amongst men with intellectual disabilities who have a history of criminal offending
Aim: Little is known about the self-rated health status of people with co-morbid autism and intellectual disabilities (ID) in whole country populations. This paper will present analysis of: self-rated general health status, demographic factors, and prevalence of other disabilities for people with co-morbid autism and ID, as well as people with autism only. Method: We analysed data from Scotland’s Census 2011, and generated descriptive statistics. Results: People with co-morbid autism and ID (n=5,709)comprised 0.1% of the total population of Scotland (n=5,295,403) and 18 .0% of the whole population of people with autism in Scotland(n=31,712) across all ages. Only 2,863 (50.1%) people with co-morbid autism and ID rated their health as good or very good, compared with 19,97 1 (76.8%) of all people with autism only. Conclusions: Health is poorer for people with c o-morbid autism and ID than for people with autism only. Further analysis will explore the impact of individual and household characteristics on the health o f people with co-morbid autism and ID
Management and prevalence of long-term conditions in primary health care for adults with intellectual disabilities compared with the general population: a population-based cohort study
Background:
In the UK, general practitioners/family physicians receive pay for performance on management of long-term conditions, according to best-practice indicators.
Method:
Management of long-term conditions was compared between 721 adults with intellectual disabilities and the general population (n = 764,672). Prevalence of long-term conditions was determined, and associated factors were investigated via logistic regression analyses.
Results:
Adults with intellectual disabilities received significantly poorer management of all long-term conditions on 38/57 (66.7%) indicators. Achievement was high (75.1%–100%) for only 19.6% of adults with intellectual disabilities, compared with 76.8% of the general population. Adults with intellectual disabilities had higher rates of epilepsy, psychosis, hypothyroidism, asthma, diabetes and heart failure. There were no clear associations with neighbourhood deprivation.
Conclusions:
Adults with intellectual disabilities receive poorer care, despite conditions being more prevalent. The imperative now is to find practical, implementable means of supporting the challenges that general practices face in delivering equitable care
Cohort profile:Scotland’s record-linkage e-cohorts of people with intellectual disabilities, and autistic people (SCIDA)
Purpose:
To investigate health, mortality and healthcare inequalities experienced by people with intellectual disabilities, and autistic people, and their determinants; an important step towards identifying and implementing solutions to reduce inequalities. This paper describes the cohorts, record-linkages and variables that will be used.
Participants:
Scotland’s Census, 2011 was used to identify Scotland’s citizens with intellectual disabilities, and autistic citizens, and representative general population samples with neither. Using Scotland’s community health index, the Census data (demography, household, employment, long-term conditions) were linked with routinely collected health, death and healthcare data: Scotland’s register of deaths, Scottish morbidity data 06 (SMR06: cancer incidence, mortality, treatments), Prescribing Information System (identifying asthma/chronic obstructive pulmonary disease; angina/congestive heart failure/hypertension; peptic ulcer/reflux; constipation; diabetes; thyroid disorder; depression; bipolar disorders; anxiety/sleep; psychosis; attention deficit hyperactivity disorder; epilepsy; glaucoma), SMR01 (general/acute hospital admissions and causes, ambulatory care sensitive admissions), SMR04 (mental health admissions and causes), Scottish Care Information–Diabetes Collaboration (diabetic care quality, diabetic outcomes), national bowel screening programme and cervical screening.
Findings to date:
Of the whole population, 0.5% had intellectual disabilities, and 0.6% were autistic. Linkage was successful for >92%. The resultant e-cohorts include: (1) 22 538 people with intellectual disabilities (12 837 men and 9701 women), 4509 of whom are children <16 years, (2) 27 741 autistic people (21 390 men and 6351 women), 15 387 of whom are children <16 years and (3) representative general population samples with neither condition. Very good general health was reported for only 3389 (15.0%) people with intellectual disabilities, 10 510 (38.0%) autistic people, compared with 52.4% general population. Mental health conditions were reported for 4755 (21.1%) people with intellectual disabilities, 3998 (14.4%) autistic people, compared with 4.2% general population.
Future plans:
Analyses will determine the extent of premature mortality, causes of death, and avoidable deaths, profile of health conditions and cancers, healthcare quality and screening and determinants of mortality and healthcare