Dataset Information

Health and wellbeing of people with intellectual disability in New South Wales, Australia: a data linkage cohort.

ABSTRACT:

Purpose

People with intellectual disability (ID) experience high rates of physical and mental health problems, while access to appropriate healthcare is often poor. This cohort was established to develop an epidemiological profile related to the health, health service use, disability services, mortality and corrective services records of people with ID.

Participants

The cohort contains 92 542 people with ID (40% females) with a median age of 23 years (IQR: 12-43 years) and 2 004 475 people with a neuropsychiatric or developmental disorder diagnosis (50% females) with a median age of 51 years (IQR: 29-73 years) from New South Wales, Australia. The whole sample contains records for 2 097 017 individuals with most data sets spanning financial years 1 July 2001 to 30 June 2016. A wide range of data from linked population data sets are included in the areas of disability, health, corrective services and targeted specialist support services in public schools, Public Guardian and Ombudsman services.

Findings to date

This study includes one of the largest cohorts of people with ID internationally. Our data have shown that the presence of ID is significantly associated with emergency department presentations and psychiatric readmissions after the first psychiatric admission based on a subcohort of people with a psychiatric admission. Adults with ID experience premature mortality and over-representation of potentially avoidable deaths compared with the general population.

Future plans

Within the health service system, we will examine different components, that is, inpatient, emergency adult services, children and younger people services and costs associated with healthcare as well as mortality, cause and predictors of death. The neuropsychiatric and developmental disorders comparison cohort allows comparisons of the physical health, mental health and service use profiles of people with ID and those with other neuropsychiatric disorders.

SUBMITTER: Reppermund S

PROVIDER: S-EPMC6773320 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Health and wellbeing of people with intellectual disability in New South Wales, Australia: a data linkage cohort.

Reppermund Simone S Heintze Theresa T Srasuebkul Preeyaporn P Reeve Rebecca R Dean Kimberlie K Smith Melinda M Emerson Eric E Snoyman Phillip P Baldry Eileen E Dowse Leanne L Szanto Tracey T Sara Grant G Florio Tony T Johnson Anina A Clements Melissa M McKenzie Kathryn K Trollor Julian J

BMJ open 20190930 9

<h4>Purpose</h4>People with intellectual disability (ID) experience high rates of physical and mental health problems, while access to appropriate healthcare is often poor. This cohort was established to develop an epidemiological profile related to the health, health service use, disability services, mortality and corrective services records of people with ID.<h4>Participants</h4>The cohort contains 92 542 people with ID (40% females) with a median age of 23 years (IQR: 12-43 years) and 2 004 4 ...[more]

PMID: 31575581

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Project description:PurposePeople with intellectual disability are a minority group who experience poorer physical and mental health than the general population and have difficulty accessing healthcare services. There is lack of knowledge about healthcare service needs and gaps experienced by people with intellectual disability. This study aims to interrogate a large linked administrative data set containing hospital admissions, presentations to emergency departments (ED) and mortality data to provide evidence to inform the development of improved health and mental health services for this population.ParticipantsA retrospective cohort of people with intellectual disability (n=51 452) from New South Wales (NSW), Australia, to explore health and mental health profiles, mortality, pattern of health service use and associated costs between 2005 and 2013. The cohort is drawn from: the Disability Services Minimum Data Set; Admitted Patients Data Collection; Emergency Department Data Collection, Australian Bureau of Statistics Death Registry and Registry of Births, Deaths and Marriages. Mental health service usage among those with intellectual disability will be compared to a cohort of people who used mental health services (n=1 073 139) and service usage other than for mental health will be compared with published data from the general population.Findings to dateThe median age of the cohort was 24 at the time of the last hospital admission and 21 at the last ED presentation. The cohort has a higher proportion of men than women and accounts for 0.6% of the NSW population in 2011. Over 70% had up to 5 ED presentations and hospitalisations between 2005 and 2012. A high proportion of people with intellectual disability live in the most disadvantaged neighbourhoods.Future plansResults will be used to inform the development of more responsive healthcare, including improved interactions between health, social and disability supports. More generally, the results will assist the development of more inclusive policy frameworks for people with intellectual disability.

Project description:IntroductionDespite being a preventable cause of death, drowning is a global public health threat. Australia records an average of 288 unintentional drowning deaths per year; an estimated annual economic burden of $1.24 billion AUD ($2017). On average, a further 712 hospitalisations occur due to non-fatal drowning annually. The Australian state of New South Wales (NSW) is the most populous and accounts for 34% of the average fatal drowning burden. This study aims to explore the demographics and outcome of patients who are admitted to hospitals for drowning in NSW and also investigates prediction of patients' outcome based on accessible data.Methods and analysisThis protocol describes a retrospective, cross-sectional data linkage study across secondary data sources for any person (adult or paediatric) who was transferred by NSW Ambulance services and/or admitted to a NSW hospital for fatal or non-fatal drowning between 1/1/2010 and 31/12/2019. The NSW Admitted Patient Data Collection will provide data on admitted patients' characteristics and provided care in NSW hospitals. In order to map patients' pathways of care, data will be linked with NSW Ambulance Data Collection and the NSW Emergency Department Data Collection. Finally patient's mortality will be assessed via linkage with NSW Mortality data, which is made up of the NSW Register of Births, Deaths and Marriages and a Cause of Death Unit Record File. Regression analyses will be used to identify predicting values of independent variables with study outcomes.Ethics and disseminationThis study has been approved by the NSW Population & Health Services Research Ethics Committee. Results will be disseminated through peer-reviewed publications, mass media releases and at academic conferences. The study will provide outcome data for drowning patients across NSW and study results will provide data to deliver evidence-informed recommendations for improving patient care, including updating relevant guidelines.

Project description:BackgroundDespite the high prevalence of epilepsy and multiple barriers to care in people with intellectual disability, the risk of returning to hospital after an admission for epilepsy is largely unknown. In this study, we sought to quantify and compare readmission and emergency department (ED) presentations after hospitalisation for epilepsy in people with and without intellectual disability.Methods and findingsUsing linked administrative datasets, we conducted a retrospective cohort study of people aged 5-64 years with an acute hospitalisation for epilepsy from 2005-2014 in New South Wales, Australia. Acute readmission and ED presentation rates within 30, 90, and 365 days of the index hospitalisation were estimated and compared between people with and without intellectual disability using modified Poisson regression. Of 13537 individuals with an index hospitalisation, 712 children and 1862 adults had intellectual disability. Readmission and ED presentation after the index hospitalisation were common in people with intellectual disability. Within 30 days, 11% of children and 15.6% of adults had an all-cause readmission and 18% of children and 23.5% of adults had an ED presentation. Over 60% of both children and adults presented to an ED within a year. Neurological, respiratory, and infectious conditions were overrepresented reasons for readmission in people with intellectual disability. Age-adjusted relative risks (RRs) within each period showed a higher risk of readmission and ED presentation in children and adults with intellectual disability than without. Most RRs remained statistically significant after controlling for covariates. The largest adjusted RRs were observed for readmission for epilepsy (RR 1.70, 95% CI: 1.42 to 2.04) and non-epilepsy related conditions (RR 1.73, 95%: CI 1.43 to 2.10) in children. Study limitations include lack of clinical data.ConclusionsIncreased risk of returning to acute care after epilepsy hospitalisation suggests there is a need to improve epilepsy care for people with intellectual disability. We recommend research into strategies to improve management of both seizures and comorbidity.

Project description:Adults with intellectual disability have high health care needs. Despite frequent contact with health services, they often receive inadequate health care. One method to improve health care delivery is reasonable adjustments, that is, the adaptation of health care delivery such that barriers to participation are removed for the person with disability. A starting point for the provision of reasonable adjustments is recognition of intellectual disability during the health care contact. To determine rates and predictors of the recognition of intellectual disability during hospital admissions, and its impact on admission metrics, we examined a population of adults with intellectual disability identified from disability services datasets from New South Wales, Australia between 2005 and 2014. Recognition of intellectual disability was determined by the recording of an International Classification of Diseases 10th revision (ICD-10) diagnostic code for intellectual disability during a given hospital admission. We examined how recognition of intellectual disability related to length of hospital episodes. We found an overall low rate of recognition of intellectual disability (23.79%) across all hospital episodes, with the proportion of hospital episodes recognising intellectual disability decreasing from 2005-2015. Admissions for adults with complex health profiles (e.g., those with many comorbidities, those with Autism Spectrum Disorder, and those admitted for urgent treatment) were more likely to recognise intellectual disability, but admissions for adults with complexity in other domains (i.e., for those in custody, or those with drug and alcohol disorders) were less likely to recognise intellectual disability. Recognition of intellectual disability was associated with longer episodes of care, possibly indicating the greater provision of reasonable adjustments. To improve the recognition of intellectual disability for adults during health service contacts, we advocate for the implementation of targeted initiatives (such as a nationwide disability flag to be included in health service records) to improve the provision of reasonable adjustments.

Project description:ObjectivesAustralian Aboriginal children experience earlier, more frequent and more severe otitis media, particularly in remote communities, than non-Aboriginal children. Insertion of ventilation tubes is the main surgical procedure for otitis media. Our aim was to quantify inequalities in ventilation tube insertion (VTI) procedures between Australian Aboriginal and non-Aboriginal children, and to explore the influence of birth characteristics, socioeconomic background and geographical remoteness on this inequality.DesignRetrospective cohort study using linked hospital and mortality data from July 2000 to December 2008.Setting and participantsA whole-of-population cohort of 653 550 children (16 831 Aboriginal and 636 719 non-Aboriginal) born in a New South Wales hospital between 1 July 2000 and 31 December 2007 was included in the analysis.Outcome measureFirst VTI procedure.ResultsVTI rates were lower in Aboriginal compared with non-Aboriginal children (incidence rate (IR), 4.3/1000 person-years; 95% CI 3.8 to 4.8 vs IR 5.8/1000 person-years; 95% CI 5.7 to 5.8). Overall, Aboriginal children were 28% less likely than non-Aboriginal children to have ventilation tubes inserted (age-adjusted and sex-adjusted rate ratios (RRs) 0.72; 95% CI 0.64 to 0.80). After adjusting additionally for geographical remoteness, Aboriginal children were 19% less likely to have ventilation tubes inserted (age-adjusted and sex-adjusted RR 0.81; 95% CI 0.73 to 0.91). After adjusting separately for private patient/health insurance status and area socioeconomic status, there was no significant difference (age-adjusted and sex-adjusted RR 0.96; 95% CI 0.86 to 1.08 and RR 0.93; 95% CI 0.83 to 1.04, respectively). In the fully adjusted model, there were no significant differences in VTI rates between Aboriginal and non-Aboriginal children (RR 1.06; 95% CI 0.94 to 1.19).ConclusionsDespite a much higher prevalence of otitis media, Aboriginal children were less likely to receive VTI procedures than their non-Aboriginal counterparts; this inequality was largely explained by differences in socioeconomic status and geographical remoteness.

Project description:PURPOSE:Health systems must move from recognition to action if we are to address premature mortality in people with mental illness. Population data registers are an essential tool for planning and monitoring improvement efforts. The Mental Health Living Longer (MHLL) programme establishes a population-wide data linkage to support research translation and service reform in New South Wales (NSW), Australia. PARTICIPANTS:A total of 8.6?million people who have had contact with NSW public and private health services between July 2001 and June 2018 are currently included in the study. Data include more than 120?million linked records from NSW data collections covering public and private hospital care, emergency departments, ambulance, community mental health services, cancer notifications and care, and death registrations. Linkage is occurring with population-wide breast and cervical cancer screening programmes. Data will be updated 6 monthly. FINDINGS TO DATE:The cohort includes 970?145 people who have received mental healthcare: 79% have received community mental healthcare, 35% a general hospital admission with a primary mental health diagnosis and 25% have received specialist mental health inpatient care. The most frequent pattern of care is receipt of community mental healthcare only (50%). The median age of the mental health cohort is 34 years, and three-quarters are younger than 53 years. Eleven per cent of the mental health cohort had died during the observation period. Their median age at death was 69 years, which was younger than the median age at death for people accessing other health services. FUTURE PLANS:The MHLL programme will examine (i) all-cause mortality, (ii) suicide, (iii) cancer mortality and (iv) medical mortality. Within each theme, the programme will quantify the problem in mental health service users compared with the NSW population, describe the people most affected, describe the care received, identify predictors of premature mortality, and identify variation and opportunities for change.

Dataset Information

Health and wellbeing of people with intellectual disability in New South Wales, Australia: a data linkage cohort.

Purpose

Participants

Findings to date

Future plans

Publications

Health and wellbeing of people with intellectual disability in New South Wales, Australia: a data linkage cohort.

Similar Datasets

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