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

Abstract

PurposePeople 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.ParticipantsThe 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 dateThis 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 plansWithin 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.

Using linked administrative data to determine the prevalence of intellectual disability in adult prison in New South Wales, Australia

“…Data are drawn from a broader linkage infrastructure (Reppermund et al 2019) examining the epidemiological profile of people with neuropsychiatric disorders in NSW. It contains a near whole of NSW population sample of individuals with ID (n = 92 542), 1.13% of the NSW population in calendar year 2015 that falls within the 1-2% of the adult population estimated to have an ID (Wen 1997;Maulik et al 2011;Bourke et al 2016).…”

“…A key strength of the linked administrative data in this study is both the near population size sample of the ID population in NSW (Reppermund et al 2019) and the linking of health services and disability support services data together with data from corrective services. That 4.3% of the adult custody population was identified as having an ID reinforces previous work finding that there is an over-representation of ID in custody (Hayes et al 2007;Søndenaa et al 2008).…”

Association of Intellectual Disability With All-Cause and Cause-Specific Mortality in Sweden

“…Compared with the general population, those with ID have poor physical and mental health. 2 , 3 , 4 In addition, ID has been associated with shorter life expectancy of up to 2 decades and low mean age at death, 5 , 6 although the mortality discrepancy between those with ID and the general population has decreased in the past decades. 5 The increase in mean age at death in ID may illustrate the improvements in policies and practices, including the deinstitutionalization initiated in many high-income countries during the 1970s and 1980s that eventually led to the complete closure of large institutions in Sweden.…”

Speech Disorders of Genetic Origin in Teaching Practice

“…It has been shown that speech function disorder can have a diagnostic value as an early symptom in such conditions as organic brain damage [12], complex disorders of the nervous system development [3], and mental retardation [13][14][15].…”