Addressing the High Rates of Mortality in People With Intellectual Disability | Pediatrics | JAMA Network Open | JAMA Network
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Invited Commentary
June 22, 2021

Addressing the High Rates of Mortality in People With Intellectual Disability

Author Affiliations
  • 1The Department of Developmental Disability Neuropsychiatry, University of New South Wales, Sydney, New South Wales, Australia
  • 2Centre for Healthy Brain Ageing, School of Psychiatry, University of New South Wales, Sydney, New South Wales, Australia
JAMA Netw Open. 2021;4(6):e2113446. doi:10.1001/jamanetworkopen.2021.13446

The study by Hirvikoski et al1 provides an important and timely reminder of the health challenges faced by people with intellectual disability (ID). Using 2 Swedish population-based data sets to identify people with ID, they showed that individuals with ID have a mortality rate between 2.86- and 13.15-times greater than the rate in the general population (with mortality rates increasing as ID severity increases) and die of causes that are amenable to health care at 7.75 times the mortality rate of the general population. Overall, Hirvikoski et al1 conclude that, even in modern egalitarian welfare societies, persistent health challenges exist for people with ID. The authors close by proposing that these challenges could be addressed through clear identification of ID in health registries and more awareness by health professionals of the issues faced by individuals with ID.

The study Hirvikoski et al1 is one of the most comprehensive of its kind to date, leveraging a nation’s worth of data over an extensive period. The findings echo international research that showed high rates of mortality; inflated rates of deaths from causes that were amenable to health care; premature mortality; and an overrepresentation in death from neoplasms, nervous system disorders (especially epilepsy), and circulatory system disorders among people with ID compared with the general population.2,3 Overall, the study reinforces a growing body of evidence that health systems around the world systematically fail to meet the needs of people with ID.

Given the accumulated evidence of health inequalities among people with ID, the question is, what can health professionals and policy makers do to improve the health outcomes and combat early mortality for people with ID? We propose 5 recommendations to enhance health outcomes for people with ID, reiterating and extending the recommendations of Hirvikoski et al.1

First, train health professionals in recognizing and addressing the health needs of people with ID. Australian research has shown that health care professionals are underequipped to deal with the health needs of people with ID, owing to a lack of appropriate training.4 Specific education and training for health professionals at all stages, from medical school to specialist training, on providing care for people with ID, can lead to earlier identification and better management of conditions that are amenable to health care.

Second, include people with ID in policy and public health initiatives to address health inequality and meet the needs of this population. Successful health service delivery requires a strong policy framework, which can identify and prioritize this group as one that deserves specific attention.5 In contrast, the current underrepresentation of people with ID in health policy in many countries serves as another substantial barrier to appropriate health care.

Third, ensure better integration of health and disability services. A proactive disability support sector that assists people with ID to access health care and integrated supports across health and disability services is required. This approach can help with earlier diagnosis and treatment to prevent or postpone the adverse effects of chronic health conditions.

Fourth, develop relevant nationwide data assets that track health care use and causes of mortality for individuals with ID. Specific data assets for ID are limited across the world, despite the substantial value these data assets contribute to understanding the life experiences of people with ID.6 The benefits of such data assets are exemplified in the study by Hirvikoski et al,1 providing the authors a comprehensive picture of health outcomes for people with ID in Sweden. Other countries should work to build similar data assets to assist researchers in examining ID.

Fifth, improve the process for reviewing and reporting causes of death for people with ID. The implementation of the Learning Disabilities Mortality Review program in England has shown that reviews of causes of death for people with ID provide substantial benefits, such as correctly identifying and coding these causes.7 Regularly reviewing and reporting on the causes of death for this specific patient population can make this information be more easily accessible and targeted by appropriate health policy.

Overall, Hirvikoski et al1 have provided a timely and comprehensive insight into the state of health care for individuals with ID. They show that, even in a country that is renowned for its social security nets and egalitarian policies, people with ID are still severely disadvantaged in health care. The work by Hirvikoski et al1 prompts reflection on how to better meet the care needs of individuals with ID. To meet these care needs, we can advocate for appropriate education of health professionals, integration of disability and health services, inclusion of people with ID in policy and public health initiatives, development of relevant data assets to aid researchers who are studying ID, and better reviewing and reporting of causes of death for people with ID.

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Article Information

Published: June 22, 2021. doi:10.1001/jamanetworkopen.2021.13446

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Reppermund S et al. JAMA Network Open.

Corresponding Author: Simone Reppermund, PhD, University of New South Wales, 34 Botany St, Sydney, NSW 2052, Australia (

Conflict of Interest Disclosures: None reported.

Hirvikoski Boman  T, Tideman  M, Lichtenstein  M, Butwicka  P, A.  Association of intellectual disability with all-cause and cause-specific mortality in Sweden.   JAMA Netw Open. 2021;4(6):e2113014. doi:10.1001/jamanetworkopen.2021.13014Google Scholar
Hosking  FJ, Carey  IM, Shah  SM,  et al.  Mortality among adults with intellectual disability in England: comparisons with the general population.   Am J Public Health. 2016;106(8):1483-1490. doi:10.2105/AJPH.2016.303240 PubMedGoogle ScholarCrossref
Reppermund  S, Srasuebkul  P, Dean  K, Trollor  JN.  Factors associated with death in people with intellectual disability.   J Appl Res Intellect Disabil. 2020;33(3):420-429. doi:10.1111/jar.12684 PubMedGoogle ScholarCrossref
Trollor  JN, Eagleson  C, Ruffell  B,  et al.  Has teaching about intellectual disability healthcare in Australian medical schools improved? A 20-year comparison of curricula audits.   BMC Med Educ. 2020;20(1):321. doi:10.1186/s12909-020-02235-w PubMedGoogle ScholarCrossref
Dew  A, Dowse  L, Athanassiou  U, Trollor  J.  Current representation of people with intellectual disability in Australian mental health policy: the need for inclusive policy development.   J Policy Pract Intellect Disabil. 2018;15(2):136-144. doi:10.1111/jppi.12239Google ScholarCrossref
Australian Government Department of Social Services. The national disability data asset. Accessed January 29, 2021.
Heslop  P, Byrne  V, Calkin  R, Gielnik  K, Huxor  A.  Establishing a national mortality review programme for people with intellectual disabilities: the experience in England.   J Intellect Disabil. 2020;17:1744629520970365. doi:10.1177/1744629520970365 PubMedGoogle Scholar
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