Angela Henderson

Introduction: While evidence consistently demonstrates elevated COVID-19 risks among people with intellectual and physical disabilities, less is known about how household living arrangements shape these inequalities. Residential setting and household size influence exposure, capacity to isolate and reliance on care yet have rarely been examined jointly with disability status at a population scale. This study aims to estimate disability-related inequalities in COVID-19 infection, hospitalisation and mortality in Scotland and to assess whether residential setting and household size modify these inequalities using linked, population-wide administrative data. Methods and analysis: This population-wide retrospective cohort study will use linked administrative data in Scotland. The study will focus on individuals present in the 2011 Scottish Census with records linkable to the Scottish population spine, which encompasses all individuals registered with a general practice who received a Community Health Index number. The cohort will comprise those who were alive, resident in Scotland and aged 16 years or older on 1 March 2020. Disability status will be classified from Census records as intellectual disability, physical disability (without intellectual disability) or a comparison group without reported disability. Address information recorded by the general practice will be linked to Ordnance Survey AddressBase Premium to assign Unique Property Reference Numbers. Residential settings will be classified from Basic Land and Property Unit codes as private dwellings or communal establishments and household size will be derived from resident counts at each property. Following linkage to the Public Health Scotland COVID-19 Research Database, outcomes including infection, hospitalisation and mortality will be ascertained from 1 March 2020 to 30 April 2022. Cox proportional hazards models will estimate associations between disability status, household living arrangements and COVID-19 outcomes, adjusting for relevant covariates. Effect modification will be assessed by evaluating interactions between disability status and household living arrangements on both multiplicative and additive scales. Ethics and dissemination: Ethical approval was granted by the College of Social Sciences Research Ethics Committee, University of Glasgow (reference: 400200099). Data linkage was approved by the Scottish Public Benefit and Privacy Panel for Health and Social Care and the Scottish Government & National Records of Scotland Data Access Panel (reference: 2021-0119). Findings will be disseminated through peer-reviewed open-access publications and conference presentations.

Objectives To explore how well the primary care system in Scotland works for adults with intellectual disabilities (ID), using the rate of unplanned hospital admissions for ambulatory care sensitive conditions (ACSC) as a proxy indicator. As part of this, to investigate those rates and rate ratios among adults with ID and without ID, adjusting for the prevalence of a given ACSC in each population. The secondary aim was to explore deaths due to ACSC among the ID and no-ID populations. Design A population-based retrospective cohort data linkage study of adult respondents to Scotland’s 2011 Census. Self-reported 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. The prevalence of ACSCs in each population was calculated from aggregate-level data published by the National Health Service, as it was not possible to use the linked dataset for this purpose. Setting Whole population of Scotland. Participants People aged 18+ on census day (27 March 2011), including all adults with ID (n=16 840) and a 15% randomly selected comparator sample of adults without ID (n=566 074). Primary and secondary outcome measures Crude and age-sex standardised incidence rates and ratios; cumulative incidence; prevalence ratios. The exposure was ID status, and the outcomes were (1) unplanned ACSC hospital admission, (2) death with an ACSC condition listed as the main cause on the death certificate and (3) death with an ACSC condition listed as one of the causes on the death certificate. Results Adults with ID under the age of 55 had only a slightly higher risk of an unplanned ACSC hospitalisation than their general population counterparts (standardised incidence ratio 1.11; 95% CI 1.03 to 1.20). After adjusting for different ACSC prevalence in ID and non-ID cohorts, this difference in risk disappeared. These findings contrast with existing evidence from England, where a much higher unadjusted risk of unplanned ACSC hospitalisations was found among people with ID. Adults with ID had a higher risk of dying due to ACSC than adults without ID (standardised mortality ratio 2.54; 95% CI 2.19 to 2.95). Conclusions Our findings on unplanned ACSC hospitalisations suggest that 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 suggests that this system is less effective for people with ID. Future research should investigate this tension and aim to understand why the operation of the primary healthcare system seems to be worse with regards to ACSC mortality than with regards to unplanned ACSC hospitalisations.

IntroductionDisabled people experienced a disproportionate burden of COVID-19, yet evidence on how household living arrangements shaped these outcomes across disability groups remains limited. ObjectiveTo describe the creation, content, and baseline characteristics of a population-based linked administrative cohort for studying disability, residential context, and COVID-19 infection, hospitalisation, and mortality in Scotland. MethodsThe cohort was assembled from Community Health Index records for people alive and resident in Scotland on 1 March 2020 whose residential addresses could be linked to Unique Property Reference Numbers. Records for those aged under 16 years at that date were excluded, and the remainder were linked to the 2011 Scottish Census to obtain disability status and sociodemographic characteristics. Disability was classified sequentially into three mutually exclusive groups: intellectual disability, including individuals who may also have reported physical or sensory disability; physical disability, including sensory impairments but excluding intellectual disability; and a comparison group without reported intellectual or physical disability. Household context was characterised by residential setting and household size. Residential setting was classified from Basic Land and Property Unit codes as private dwellings, small communal establishments (fewer than 50 linked residents), or large communal establishments (50 or more linked residents). Household size was grouped as 1, 2--4, 5--7, 8--10, or 11 or more linked residents. Laboratory-confirmed SARS-CoV-2 infection and COVID-19-related hospitalisation and mortality were ascertained from national surveillance and administrative records between 1 March 2020 and 30 April 2022. Age- and sex-adjusted incidence rates were estimated using Poisson regression with log person-time as an offset. ResultsOf 4,132,960 age-eligible Community Health Index records, 3,719,651 adults (90.0%) were successfully linked to the Census and included in the cohort. Of these, 17,354 had intellectual disability, 377,706 had physical disability and 3,324,591 were in the comparison group. During follow-up, 306,343 cohort members had a laboratory-confirmed SARS-CoV-2 infection, 22,945 were hospitalised with COVID-19 and 12,893 died from COVID-19-related causes. The corresponding crude incidence rates were 592 infections, 32 hospitalisations and 16 deaths per 10,000 person-years. Age- and sex-adjusted rates were highest among adults with intellectual disability, at 1,486 infections, 86 hospitalisations and 56 deaths per 10,000 person-years. The corresponding rates were 932, 58 and 33 among adults with physical disability, and 570, 29 and 12 in the comparison group. Across all three outcomes, adjusted incidence rates were higher in communal establishments than in private dwellings and generally increased with household size. Mortality differences were especially pronounced in communal establishments and at addresses with 11 or more linked residents. ConclusionsThis population-based, Census-linked cohort integrates information on disability and residential context with national health and administrative records. Although developed to examine COVID-19 outcomes, it provides a broader platform for investigating how disability and living arrangements shape health inequalities in Scotland.

Background: Studies on avoidable mortality in adults with intellectual disabilities are limited, as are studies on causes of death. Objectives: We aimed to quantify mortality rates, and causes, and identify factors (i.e., age, sex, Scottish Index of Multiple Deprivation (SIMD)) related to avoidable mortality in adults with intellectual disabilities. Design: A record linkage national cohort study. Setting: A cohort of adults with intellectual disabilities with or without co-occurring autism, aged 25+ years and a randomly selected comparison group aged 25+ years without intellectual disabilities or autism identified from Scotland’s Census, 2011. Census records were linked to the National Records of Scotland Statutory Register of Deaths database to ascertain all deaths from 2011 to 2019. Participants: We analysed data on 14 477 adults with intellectual disabilities aged 25+ years and a randomly selected comparison group of 506 207 adults aged 25+ without intellectual disabilities identified from Scotland’s Census 2011. Primary and secondary outcome measures: We ran χ ² tests and t-tests to investigate individual characteristics and differences in age at death for adults with intellectual disabilities compared with peers in the general population. Cox proportional hazard models were fitted to calculate risk of mortality (all-cause, avoidable, treatable, preventable) unadjusted and adjusted for age, sex and SIMD. We then calculated mortality rates, using crude and indirect standardisation methods. Results: During the 8.5-year follow-up, 23.7% (crude death rate of 3033.3 per 100 000) of adults with intellectual disabilities died compared with 13.8% of controls. The median age at death among adults aged 25+ with intellectual disabilities was 65.0 years compared with 80.0 years for adults without intellectual disabilities. For all-cause mortality, the age-standardised mortality ratio (SMR) in the population with intellectual disabilities was 3.1 (95% CI 3.0 to 3.2). The SMRs were higher for the youngest age groups, women and in the most affluent areas. This was also the case for SMRs for avoidable, treatable and preventable deaths. For the population of adults with intellectual disabilities, 31.7% of recorded deaths were considered avoidable, 21.1% were treatable and 19.9% were preventable. In the controls, 18.2% of deaths were considered avoidable, 8.8% treatable and 14.7% preventable. Down syndrome and dementia were the two most commonly recorded underlying causes of death for people with intellectual disabilities while malignant neoplasm of bronchus and lung and acute myocardial infarction were most commonly recorded in the general population. Conclusions: Risk of all-cause, avoidable, treatable and preventable mortality was higher for adults with intellectual disabilities than their peers. The highest SMRs were observed for youngest adults, women and individuals living in the most affluent areas.

Objectives: To investigate hospitalisation rates for the ambulatory care-sensitive conditions of epilepsy, asthma and insulin-dependent diabetes in school-aged children and young people with intellectual disabilities in comparison with their peers. Design: Record-linkage cohort study. Scotland’s Pupil Census, 2008–2013, was used to identify pupils with and without intellectual disabilities and was linked with the Prescribing Information Service to identify pupils with epilepsy, asthma and insulin-dependent diabetes, and the Scottish Morbidity Records-01 to identify hospital admissions. Setting: The general child population of Scotland. Participants: School pupils aged 4–19 years; 18 278 with intellectual disabilities and 777 912 without intellectual disabilities. Outcomes: Overall, emergency and non-emergency hospitalisations for epilepsy, asthma and/or diabetes; and length of stay. Results: Epilepsy and asthma were more prevalent in pupils with intellectual disabilities (8.8% and 8.9%, respectively, compared with 0.8% and 6.9% among pupils without intellectual disabilities, p<0.001), whereas insulin-dependent diabetes was not (0.5% prevalence). After adjusting for prevalence, pupils with intellectual disabilities and epilepsy had more epilepsy-related admissions than their peers (adjusted Hazard Ratio (aHR) 2.24, 95% CI 1.97, 2.55). For emergency admissions, these stays were longer compared with controls (adjusted incidence rate ratio (aIRR) 2.77, 95% CI 2.13, 3.59). Pupils with intellectual disabilities and asthma had similar admission rates due to asthma as control pupils with asthma (aHR 0.81, 95% CI 0.62, 1.06), but emergency admissions were longer (aIRR 2.72, 95% CI 1.49, 4.96). Pupils with intellectual disabilities and insulin-dependent diabetes had similar admission rates to controls (aHR 0.94, 95% CI 0.63, 1.41) but with shorter admissions (aIRR 0.71, 95% CI 0.51, 0.99). Conclusions: Our findings suggest pupils with intellectual disabilities may receive poorer community healthcare than their peers for the common conditions of epilepsy and asthma. Hospital admissions are disruptive for both the child and their family. Epilepsy and asthma are associated with avoidable deaths; hence, a better understanding of these hospitalisations is important.

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, and age–sex standardised incident rate ratios/standardised mortality ratios (SIR/SMR), with 95% CIs. 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 (total SMR=1.54, male SMR=1.59), kidney (total SMR=2.01 u, female SMR=2.85 u), female genital organs (SMR=2.34 (ovarian SMR=2.86 u, body of uterus SMR=2.11), breast (female SMR=1.58) and metastatic cancer of unknown primary origin (female SMR=2.50 u, 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.

Background: Inclusive research is widely accepted as an essential part of the process to democratise knowledge creation and dissemination. However, while peer review is an important part of academic publishing, the potential to include people with learning disabilities in this element of the research process has not previously been explored using a deliberative approach.Methods: Accessibility adaptations were made to the citizens' jury approach enabling people with learning disabilities to participate. Sixteen adults with mild to moderate learning disabilities were recruited to participate in the adapted citizens' jury. Jury members took part in capacity‐building workshops to develop their knowledge of research and research processes. Six expert witnesses presented evidence to the citizens' jury and were questioned on aspects of inclusive research, representation, peer review and academic publishing processes. Facilitators supported citizens' jury members to reflect on the evidence presented and to develop recommendations for inclusive peer review.Findings: The citizens' jury was an effective inclusive research approach in this case. Jurors made recommendations related to the question of inclusive peer review: inclusive reviews should be done by groups rather than individuals; the research under review must be in accessible formats and on relevant topics; reviewers need sufficient time to conduct reviews; and diverse groups of people with learning disabilities should be involved.Conclusions: People with learning disabilities appreciate the importance of peer review but do not necessarily want to participate in it. This jury suggested creative approaches to disseminating, reviewing and engaging with research, including building more opportunities for dialogue between researchers and self‐advocates. The adapted citizens' jury was a novel and effective method of supporting deliberation on this topic but other approaches to including the views and experiences of those with more severe learning disabilities should be explored.

People with intellectual disabilities may face a disproportionate risk of experiencing high anticholinergic burden, and its negative sequalae, from a range of medications, and at younger ages than the general population, but there has been little previous study. Our aim was to determine the source of anticholinergic burden from prescribed medication. Retrospective matched observational study using record linkage. Adults with (n = 4,305), and without (n = 12,915), intellectual disabilities matched by age-, sex- and neighbourhood deprivation. The main outcome measure was the prescription of long-term (approximately 12 months use) anticholinergic medications overall (classified according to the Anticholinergic Risk Scale [ARS]), by drug class, individual drugs, and polypharmacy. Adults with n = 1,654 (38.4%), and without n = 3,047 (23.6%), intellectual disabilities were prescribed medications long-term with anticholinergic effects. Of those on such drugs, adults with intellectual disabilities were most likely to be on central nervous system (62.6%), gastrointestinal (46.7%), and cardiovascular (28.4%) medications. They were prescribed more central nervous system, gynaecological/urinary tract, musculoskeletal, and respiratory medications, and less cardiovascular, infection, and endocrine medications than their matched comparators. Regardless of age, sex, or neighbourhood deprivation, adults with intellectual disabilities had greater odds of being prescribed antipsychotics (OR = 5.37 [4.40–6.57], p < 0.001), antiepileptics (OR = 2.57 [2.22–2.99], p < 0.001), and anxiolytics/hypnotics (OR = 1.28 [1.06–1.56], p = 0.012). Compared to the general population, adults with intellectual disabilities were more likely to be exposed to overall anticholinergic polypharmacy (OR = 1.48 [1.33–1.66], p < 0.001), and to psychotropic polypharmacy (OR = 2.79 [2.41–3.23], p < 0.001). Adults with intellectual disabilities are exposed to a greater risk of having very high anticholinergic burden through polypharmacy from several classes of medications, which may be prescribed by several different prescribers. There is a need for evidence-based recommendations specifically about people with intellectual disabilities with multiple physical and mental ill-health conditions to optimise medication use, reduce inappropriate prescribing and adverse anticholinergic effects.

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.

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 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.