Epidemiology and Health

Cohort Profile

Cohort profile: understanding health service system needs for people with intellectual disability using linked data in New South Wales, Australia: Simone Reppermund, Preeyaporn Srasuebkul, Claire M. Vajdic, Sallie-Anne Pearson, Rachael E. Moorin, Julian N. Trollor; Epidemiol Health. 2024;46:e2024054. Published online June 12, 2024; DOI: https://doi.org/10.4178/epih.e2024054

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Abstract

This cohort profile describes one of the largest linked datasets in the world concerning the health of people with intellectual disability. The cohort comprises a retrospective group of 100,089 individuals with intellectual disability who received disability and/or health services in New South Wales, Australia. Of these participants, 34% were female, with a median age at cohort entry of 3 years (interquartile range, 0-19). A separate comparator cohort included 455,677 individuals, matched by 5-year age group, sex, and residential postcode at a 5:1 ratio. Initial results indicate that between 2001 and 2018, people with intellectual disability experienced more than double the rate of hospitalisations (538 vs. 235 per 1,000 person-years), as well as markedly higher rates of emergency department presentations (707 vs. 379 per 1,000 person-years) and use of ambulatory mental health services (1,012 vs. 157 per 1,000 person-years), relative to the comparator cohort. The largest disparities in hospital admissions were for mental disorders, dialysis, and diseases of the nervous system and sense organs. Furthermore, individuals with intellectual disability had more than double the rate of dispensed medications found in the comparator cohort. Of these medications, 46.6% were for the treatment of nervous system conditions, as opposed to 24.7% for the comparator cohort. The mean±standard deviation age at death was 52±19 years for people with intellectual disability and 64±22 years for the comparator participants.

Summary

Key Message
This cohort study of individuals with intellectual disability is one of the largest internationally looking at health profiles and health service use. The goal is to improve the health and well-being of individuals with intellectual disability by informing the development of services, variations in prescribing practices, and access to preventative health services.

Citations

Citations to this article as recorded by

Addressing the challenges of intellectual disability identification for health policy and research in Australia
Helen Leonard, Kingsley Wong, Peiwen Liao, Manzoor Khan, Zoe Aitken, Jenny Bourke, Julian N. Trollor, Jenny Downs, Mary-Ann O’Donovan, Anne M. Kavanagh, Preeyaporn Srasuebkul
Frontiers in Psychiatry.2026;[Epub] CrossRef
Life expectancy of people with intellectual disability: a retrospective cohort study from New South Wales, Australia
Preeyaporn Srasuebkul, Julian Trofimovs, Julian Trollor
BMJ Open.2026; 16(2): e110184. CrossRef
Prevalence of psychiatric conditions in people with intellectual disability: A record linkage study in New South Wales, Australia
Samuel RC Arnold, Yunhe Huang, Preeyaporn Srasuebkul, Rachael C Cvejic, Stefan C Michalski, Julian N Trollor
Australian & New Zealand Journal of Psychiatry.2025; 59(5): 433. CrossRef
Predictors of mental illness onset in adolescents and adults with intellectual disability: A retrospective cohort study in New South Wales, Australia
Stefan C Michalski, Yunhe Huang, Preeyaporn Srasuebkul, Rachael C Cvejic, Samuel RC Arnold, Julian N Trollor
Australian & New Zealand Journal of Psychiatry.2025; 59(12): 1095. CrossRef
Contraception use in women with intellectual disability: a retrospective cohort study
Yunhe Huang, Peiwen Liao, Preeyaporn Srasuebkul, Pramudie Gunaratne, Julian Trollor
BMJ Sexual & Reproductive Health.2025; : bmjsrh-2025-202938. CrossRef

Original Article

Nationwide trends in the incidence of tuberculosis among people with disabilities in Korea: a nationwide serial cross-sectional study: Jinsoo Min, So Young Kim, Jong Eun Park, Yeon Yong Kim, Jong Hyock Park; Epidemiol Health. 2022;44:e2022098. Published online October 28, 2022; DOI: https://doi.org/10.4178/epih.e2022098

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Abstract Summary PDF Supplementary Material

Abstract

OBJECTIVES
Studies on the association between disabilities and tuberculosis (TB) are scarce. We aimed to assess the risk of active TB disease among people with disabilities.

METHODS

We conducted a nationwide serial cross-sectional study using national registry linkage databases from 2008 to 2017. The crude and age-standardized and sex-standardized incidence rates of TB were analyzed for each year according to the presence, type, and severity of disabilities. The crude incidence rate and odds of developing TB disease were examined with a multivariable logistic regression model using data from 2017.

RESULTS

The overall incidence of active TB decreased between 2008 and 2017. The age- and sex-standardized incidence rates of TB disease among people with disabilities were significantly higher than among those without disabilities throughout all observed years (p<0.001). As of 2017, the population with disabilities had a higher crude incidence rate of active TB disease than that without disabilities (119.9/100,000 vs. 48.5/100,000 person-years, p<0.001), regardless of sex, income level, and place of residence. Compared to those without disabilities, those with disabilities had higher odds of active TB (adjusted odds ratio [aOR], 1.19; 95% confidence interval [CI], 1.15 to 1.24). Individuals with mental disabilities (aOR, 1.51; 95% CI, 1.24 to1.84) had the highest odds of active TB incidence, followed by those with developmental disabilities (aOR, 1.30; 95% CI, 1.09 to 1.55).

CONCLUSIONS

People with disabilities are at a greater risk of developing TB disease. Active screening and care for TB cases would be beneficial for people with disabilities.

Summary

Korean summary
장애가 있는 사람은 이차적 건강 문제가 발생할 가능성이 더 높고 그들의 건강결정요인은 결핵 발생 위험 요인과 겹친다. 장애인은 비장애인에 비해 연령과 성별에 관계없이 활동성 결핵 발병률이 현저히 높았으며, 장애 유형 중 정신장애와 발달장애가 결핵에 더 취약한 것으로 나타났다. 장애인과 같이 결핵 감염 위험이 있는 취약계층을 파악하고 이들에게 결핵진단 및 항결핵치료의 어려움을 극복할 수 있도록 다학제적 지원을 제공하는 것이 중요하겠다.

Key Message
People with disabilities are more likely to develop secondary health conditions and their social determinants of health overlap with the risk factors for developing TB disease. We found that compared to people without disabilities, a markedly higher incidence of active TB disease among people with disabilities regardless of age and sex, and mental and developmental disabilities among types of disability were more prone to TB disease. It is critical to identify the vulnerable populations, such as people with disabilities, at risk of developing TB infection and provide them with multidisciplinary support to overcome any barriers during TB diagnosis and anti-TB treatment.

Citations

Citations to this article as recorded by

Long-Term Mortality After Tuberculosis Among People With Disabilities in Korea
Jinsoo Min, So Young Kim, Jong Eun Park, Yeon Yong Kim, Hee Soo Yang, Bo Hui Park, Seong Woo Jeon, Yu Jin Kim, Bumhee Yang, Kyoung Eun Yeob, Jong Hyock Park
Journal of Korean Medical Science.2026;[Epub] CrossRef
People with disabilities are at risk of osteoporotic fractures: a population-based study in South Korea
Ji Hyoun Kim, So Young Kim, Jong Eun Park, Yo Han Im, Hyunjeong Cho, Yeon Yong Kim, Jong-Hyock Park
Journal of Public Health.2025; 47(4): 858. CrossRef
HIV knowledge and access to testing for people with and without disabilities in low‐ and middle‐income countries: evidence from 37 Multiple Indicator Cluster Surveys
Sara Rotenberg, Shanquan Chen, Jill Hanass‐Hancock, Calum Davey, Lena Morgon Banks, Hannah Kuper
Journal of the International AIDS Society.2024;[Epub] CrossRef
The Korea National Disability Registration System
Miso Kim, Wonyoung Jung, So Young Kim, Jong Hyock Park, Dong Wook Shin
Epidemiology and Health.2023; 45: e2023053. CrossRef
Nationwide Trends in Osteoporosis in Koreans With Disabilities From 2008 to 2017
Ji Hyoun Kim, So Young Kim, Jong Eun Park, Hyo Jong Kim, Hyun Jeong Jeon, Yeon Yong Kim, Jong‐Hyock Park
JBMR Plus.2023;[Epub] CrossRef
Growing disparity in the prevalence of chronic obstructive pulmonary disease between people with and without disabilities: a Korean nationwide serial cross-sectional study
Jinsoo Min, Jong Eun Park, So Young Kim, Yeon Yong Kim, Jong Hyock Park
Scientific Reports.2023;[Epub] CrossRef

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