Rates, causes and predictors of all-cause and avoidable mortality in 163,686 children and young people with and without intellectual disabilities: A record linkage national cohort study

Hughes-Mccormack, L. et al. (2022) Rates, causes and predictors of all-cause and avoidable mortality in 163,686 children and young people with and without intellectual disabilities: A record linkage national cohort study. BMJ Open, 12, e061636. (doi: 10.1136/bmjopen-2022-061636) (PMID:36113944) (PMCID:PMC9486341)

Abstract

Objectives: To investigate mortality rates and associated factors, and avoidable mortality in children/young people with intellectual disabilities. Design: Retrospective cohort; individual record-linked data between Scotland’s 2011 Census and 9.5 years of National Records for Scotland death certification data. Setting: General community. Participants: Children and young people with intellectual disabilities living in Scotland aged 5–24 years, and an age-matched comparison group. Main outcome measures: Deaths up to 2020: age of death, age-standardised mortality ratios (age-SMRs); causes of death including cause-specific age-SMRs/sex-SMRs; and avoidable deaths. Results: Death occurred in 260/7247 (3.6%) children/young people with intellectual disabilities (crude mortality rate=388/100 000 person-years) and 528/156 439 (0.3%) children/young people without intellectual disabilities (crude mortality rate=36/100 000 person-years). SMRs for children/young people with versus those without intellectual disabilities were 10.7 for all causes (95% CI 9.47 to 12.1), 5.17 for avoidable death (95% CI 4.19 to 6.37), 2.3 for preventable death (95% CI 1.6 to 3.2) and 16.1 for treatable death (95% CI 12.5 to 20.8). SMRs were highest for children (27.4, 95% CI 20.6 to 36.3) aged 5–9 years, and lowest for young people (6.6, 95% CI 5.1 to 8.6) aged 20–24 years. SMRs were higher in more affluent neighbourhoods. Crude mortality incidences were higher for the children/young people with intellectual disabilities for most International Statistical Classification of Diseases and Related Health Problems, 10th Revision chapters. The most common underlying avoidable causes of mortality for children/young people with intellectual disabilities were epilepsy, aspiration/reflux/choking and respiratory infection, and for children/young people without intellectual disabilities were suicide, accidental drug-related deaths and car accidents. Conclusion: Children with intellectual disabilities had significantly higher rates of all-cause, avoidable, treatable and preventable mortality than their peers. The largest differences were for treatable mortality, particularly at ages 5–9 years. Interventions to improve healthcare to reduce treatable mortality should be a priority for children/young people with intellectual disabilities. Examples include improved epilepsy management and risk assessments, and coordinated multidisciplinary actions to reduce aspiration/reflux/choking and respiratory infection. This is necessary across all neighbourhoods.

• Item Type: Articles
• Additional Information: Funding: This work was supported by the UK Medical Research Council (grant number: MC_PC_17217), Baily Thomas Charitable Fund and the Scottish Government via the Scottish Learning Disabilities Observatory.
• Status: Published
• Refereed: Yes
• Glasgow Author(s) Enlighten ID: Jani, Dr Bhautesh and Barlow, Ms Fiona and Hughes, Mrs Laura and Henderson, Mrs Angela and Ward, Dr Laura and Truesdale, Dr Maria and Sosenko, Dr Filip and Symonds, Dr Joseph and Rydzewska, Dr Ewelina and Dunn, Mrs Kirsty and Cairns, Professor Deborah and Cooper, Professor Sally-Ann and Melville, Professor Craig and Pell, Professor Jill and Mackay, Professor Daniel and Fleming, Dr Michael
• Authors: Hughes-Mccormack, L., Rydzewska, E., Cooper, S.-A., Fleming, M., Mackay, D., Dunn, K., Ward, L., Sosenko, F., Barlow, F., Miller, J., Symonds, J. D., Jani, B. D., Truesdale, M., Kinnear, D., Pell, J., Henderson, A., and Melville, C.
• College/School: College of Medical Veterinary and Life Sciences > School of Health & Wellbeing > General Practice and Primary Care; College of Medical Veterinary and Life Sciences > School of Health & Wellbeing > Mental Health and Wellbeing; College of Medical Veterinary and Life Sciences > School of Health & Wellbeing > Public Health
• Journal Name: BMJ Open
• Publisher: BMJ Publishing Group
• ISSN: 2044-6055
• ISSN (Online): 2044-6055
• Published Online: 16 September 2022
• Copyright Holders: Copyright © Author(s) (or their employer(s)) 2022
• First Published: First published in BMJ Open 12: e061636
• Publisher Policy: Reproduced under a Creative Commons License

Project Code	Award No	Project Name	Principal Investigator	Funder's Name	Funder Ref	Lead Dept
302957		Mental Health Data Pathfinder	Daniel Smith	Medical Research Council (MRC)	MC_PC_17217	HW - Mental Health and Wellbeing