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Health services research
Cohort profile
Health and wellbeing of people with intellectual disability in New South Wales, Australia: a data linkage cohort
  1. Simone Reppermund1,2,
  2. Theresa Heintze1,
  3. Preeyaporn Srasuebkul1,
  4. Rebecca Reeve3,
  5. Kimberlie Dean4,5,
  6. Melinda Smith5,
  7. Eric Emerson6,
  8. Phillip Snoyman7,
  9. Eileen Baldry8,
  10. Leanne Dowse3,
  11. Tracey Szanto9,
  12. Grant Sara10,11,
  13. Tony Florio1,
  14. Anina Johnson12,
  15. Melissa Clements13,
  16. Kathryn McKenzie14,
  17. Julian Trollor1,2
  1. 1 Department of Developmental Disability Neuropsychiatry, UNSW, Sydney, New South Wales, Australia
  2. 2 Centre for Healthy Brain Ageing, UNSW, Sydney, New South Wales, Australia
  3. 3 Intellectual Disability Behaviour Support Program, School of Social Sciences, UNSW, Sydney, New South Wales, Australia
  4. 4 Forensic Mental Health, School of Psychiatry, UNSW, Sydney, New South Wales, Australia
  5. 5 Justice Health and Forensic Mental Health Network, Matraville, New South Wales, Australia
  6. 6 Centre for Disability Research and Policy, Faculty of Health Sciences, University of Sydney, Sydney, New South Wales, Australia
  7. 7 Corrective Services-New South Wales, Department of Justice, Sydney, New South Wales, Australia
  8. 8 School of Social Sciences, Faculty of Arts and Social Sciences, UNSW, Syndey, New South Wales, Australia
  9. 9 Intellectual Disability Network, New South Wales Agency for Clinical Innovation, Sydney, New South Wales, Australia
  10. 10 InforMH, Health System Information and Performance Reporting Branch, NSW Ministry of Health, Sydney, New South Wales, Australia
  11. 11 School of Psychiatry, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia
  12. 12 Mental Health Review Tribunal, Gladesville, New South Wales, Australia
  13. 13 Department of Education, Sydney, New South Wales, Australia
  14. 14 NSW Ombudsman, Sydney, New South Wales, Australia
  1. Correspondence to Dr Simone Reppermund; s.reppermund{at}unsw.edu.au

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.

  • data linkage
  • health service use
  • disability services
  • intellectual disability
  • neuropsychiatric

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2019-031624

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    Footnotes

    • Contributors JT conceived and designed the study. KD, MS, EE, PhS, EB, LD, TS, GS, AJ, KM, MC and TF participated in the conceptual design of the study. SR, PrS, TH and JT drafted the manuscript. TH performed the analyses. PrS provided statistical support. RR provided expertise about health economics. All authors critically revised the manuscript and contributed to interpretation of the data. All authors read and approved the final version of the manuscript.

    • Funding The project is supported by a National Health and Medical Research Council Australia Partnerships for Better Health grant (ID: APP1056128; Title: Improving the Mental Health Outcomes of People with an Intellectual Disability).

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Ethics approval Ethical approval was obtained from the NSW Population and Health Services Research Ethics Committee (AU RED Study Reference Number: HREC/13/CIPHS/7; CINSW Reference Number: 2013/02/446) and access to the data sets was granted by relevant data custodians.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data may be obtained from a third party and are not publicly available.