Health and wellbeing of people with intellectual disability in New South Wales, Australia: a data linkage cohort
Kimberlie Dean,
Simone Reppermund,
Theresa Heintze,
Preeyaporn Srasuebkul,
Rebecca Reeve,
Melinda Smith,
Eric Emerson,
Phillip Snoyman,
Eileen Baldry,
Leanne Dowse,
Tracey Szanto,
Grant Sara,
Tony Florio,
Anina Johnson,
Melissa Clements,
Kathryn McKenzie,
Julian Trollor
Affiliations
Kimberlie Dean
5 Justice Health and Forensic Mental Health Network, Matraville, New South Wales, Australia
Simone Reppermund
2 Centre for Healthy Brain Ageing, UNSW, Sydney, New South Wales, Australia
Theresa Heintze
1 Department of Developmental Disability Neuropsychiatry, UNSW, Sydney, New South Wales, Australia
Preeyaporn Srasuebkul
3 National Centre of Excellence in Intellectual Disability Health, Faculty of Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia
Rebecca Reeve
3 Intellectual Disability Behaviour Support Program, School of Social Sciences, UNSW, Sydney, New South Wales, Australia
Melinda Smith
5 Justice Health and Forensic Mental Health Network, Matraville, New South Wales, Australia
Eric Emerson
6 Centre for Disability Research and Policy, Faculty of Health Sciences, University of Sydney, Sydney, New South Wales, Australia
Phillip Snoyman
7 Corrective Services-New South Wales, Department of Justice, Sydney, New South Wales, Australia
Eileen Baldry
School of Social Sciences, Faculty of Arts and Social Sciences, UNSW Australia, Sydney, New South Wales, Australia
Leanne Dowse
3 Intellectual Disability Behaviour Support Program, School of Social Sciences, UNSW, Sydney, New South Wales, Australia
Tracey Szanto
9 Intellectual Disability Network, New South Wales Agency for Clinical Innovation, Sydney, New South Wales, Australia
Grant Sara
Northern Clinical School, Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia
Tony Florio
1 Department of Developmental Disability Neuropsychiatry, UNSW, Sydney, New South Wales, Australia
Anina Johnson
12 Mental Health Review Tribunal, Gladesville, New South Wales, Australia
Melissa Clements
13 Department of Education, Sydney, New South Wales, Australia
Kathryn McKenzie
14 NSW Ombudsman, Sydney, New South Wales, Australia
Julian Trollor
2 Centre for Healthy Brain Ageing, UNSW, Sydney, New South Wales, Australia
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.
