title: Cohort profile: a data linkage cohort to examine health service profiles of people with intellectual disability in New South Wales, Australia.
abstract: People 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.
  
  
  
  A 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.
  
  
  
  The 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.
  
  
  
  Results 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.
authors.affiliation: Department of Developmental Disability Neuropsychiatry, School of Psychiatry, UNSW Australia, Sydney, New South Wales, Australia.|Centre for Healthy Brain Ageing, School of Psychiatry, UNSW Australia, Sydney, New South Wales, Australia.
authors.forename: Simone
authors.initials: S
authors.lastname: Reppermund
authors.affiliation: Department of Developmental Disability Neuropsychiatry, School of Psychiatry, UNSW Australia, Sydney, New South Wales, Australia.
authors.forename: Preeyaporn
authors.initials: P
authors.lastname: Srasuebkul
authors.affiliation: Department of Developmental Disability Neuropsychiatry, School of Psychiatry, UNSW Australia, Sydney, New South Wales, Australia.
authors.forename: Theresa
authors.initials: T
authors.lastname: Heintze
authors.affiliation: Department of Developmental Disability Neuropsychiatry, School of Psychiatry, UNSW Australia, Sydney, New South Wales, Australia.|Centre for Social Impact, Sydney, New South Wales, Australia.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Reeve
authors.affiliation: School of Psychiatry, UNSW Australia, Sydney, New South Wales, Australia.|Justice Health & Forensic Mental Health Network, Sydney, New South Wales, Australia.
authors.forename: Kimberlie
authors.initials: K
authors.lastname: Dean
authors.affiliation: Centre for Disability Research and Policy, University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Eric
authors.initials: E
authors.lastname: Emerson
authors.affiliation: Ageing, Disability and Home Care, Department of Family and Community Services NSW, Sydney, New South Wales, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Coyne
authors.affiliation: Corrective Services NSW, Department of Justice, Sydney, New South Wales, Australia.
authors.forename: Phillip
authors.initials: P
authors.lastname: Snoyman
authors.affiliation: Faculty of Arts and Social Sciences, School of Social Sciences, UNSW Australia, Sydney, New South Wales, Australia.
authors.forename: Eileen
authors.initials: E
authors.lastname: Baldry
authors.affiliation: Intellectual Disability Behaviour Support Program, School of Social Sciences, UNSW Australia, Sydney, New South Wales, Australia.
authors.forename: Leanne
authors.initials: L
authors.lastname: Dowse
authors.affiliation: Intellectual Disability Network, NSW Agency for Clinical Innovation, Sydney, New South Wales, Australia.
authors.forename: Tracey
authors.initials: T
authors.lastname: Szanto
authors.affiliation: InforMH, Health System Information and Performance Reporting Branch, NSW Ministry of Health, Sydney, New South Wales, Australia.|School of Psychiatry, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Grant
authors.initials: G
authors.lastname: Sara
authors.affiliation: Department of Developmental Disability Neuropsychiatry, School of Psychiatry, UNSW Australia, Sydney, New South Wales, Australia.
authors.forename: Tony
authors.initials: T
authors.lastname: Florio
authors.affiliation: Department of Developmental Disability Neuropsychiatry, School of Psychiatry, UNSW Australia, Sydney, New South Wales, Australia.|Centre for Healthy Brain Ageing, School of Psychiatry, UNSW Australia, Sydney, New South Wales, Australia.
authors.forename: Julian N
authors.identifier: 0000-0002-7685-2977
authors.initials: JN
authors.lastname: Trollor
mesh_terms: D000293:Adolescent; D000328:Adult; D017677:Age Distribution; D000368:Aged; D000369:Aged, 80 and over; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D016247:Information Storage and Retrieval; D008607:Intellectual Disability; D008297:Male; D008605:Mental Health Services / Q000706:statistics & numerical data*; D008875:Middle Aged; D009517:New South Wales / Q000453:epidemiology; D010343:Patient Admission / Q000706:statistics & numerical data*; D012042:Registries; D012044:Regression Analysis; D012107:Research Design; D012189:Retrospective Studies; D017678:Sex Distribution; D012959:Socioeconomic Factors; D055815:Young Adult
keywords: MENTAL HEALTH; data linkage; disability services; health services; intellectual disability; service utilisation