Rates and causes of mortality among children and young people with and without intellectual disabilities in Scotland: a record linkage cohort study of 796,190 schoolchildren

Smith, G. S., Fleming, M. , Kinnear, D. , Henderson, A. , Pell, J. P. , Melville, C. and Cooper, S.-A. (2020) Rates and causes of mortality among children and young people with and without intellectual disabilities in Scotland: a record linkage cohort study of 796,190 schoolchildren. BMJ Open, 10, e034077. (doi: 10.1136/bmjopen-2019-034077) (PMID:32773385)

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Objectives: To investigate mortality rates and causes in children and young people with intellectual disabilities. Design: Retrospective cohort; individual record linkage between Scotland’s annual pupil census and National Records of Scotland death register. Setting: General community. Participants: Pupils receiving local authority-funded schooling in Scotland, 2008 to 2013, with an Additional Support Need due to intellectual disabilities, compared with other pupils. Main outcome measures: Deaths up to 2015: age of death, age-standardised mortality ratios (age-SMRs); causes of death including cause-specific age-SMRs; avoidable deaths as defined by the UK Office of National Statistics. Results: 18 278/947 922 (1.9%) pupils had intellectual disabilities. 106 died over 67 342 person-years (crude mortality rate=157/100 000 person-years), compared with 458 controls over 3 672 224 person-years (crude mortality rate=12/100 000 person-years). Age-SMR was 11.6 (95% CI 9.6 to 14.0); 16.6 (95% CI 12.2 to 22.6) for female pupils and 9.8 (95% CI 7.7 to 12.5) for male pupils. Most common main underlying causes were diseases of the nervous system, followed by congenital anomalies; most common all-contributing causes were diseases of the nervous system, followed by respiratory system; most common specific contributing causes were cerebral palsy, pneumonia, respiratory failure and epilepsy. For all contributing causes, SMR was 98.8 (95% CI 69.9 to 139.7) for congenital anomalies, 76.5 (95% CI 58.9 to 99.4) for nervous system, 63.7 (95% CI 37.0 to 109.7) for digestive system, 55.3 (95% CI 42.5 to 72.1) for respiratory system, 32.1 (95% CI 17.8 to 57.9) for endocrine and 14.8 (95% CI 8.9 to 24.5) for circulatory system. External causes accounted for 46% of control deaths, but the SMR for external-related deaths was still higher (3.6 (95% CI 2.2 to 5.8)) for pupils with intellectual disabilities. Deaths amenable to good care were common. Conclusion: Pupils with intellectual disabilities were much more likely to die than their peers, and had a different pattern of causes, including amenable deaths across a wide range of disease categories. Improvements are needed to reduce amenable deaths, for example, epilepsy-related and dysphagia, and to support families of children with life-limiting conditions.

Item Type:Articles
Glasgow Author(s) Enlighten ID:Pell, Professor Jill and Fleming, Dr Michael and Smith, Ms Gillian and Henderson, Mrs Angela and Kinnear, Dr Deborah and Cooper, Professor Sally-Ann and Melville, Professor Craig
Authors: Smith, G. S., Fleming, M., Kinnear, D., Henderson, A., Pell, J. P., Melville, C., and Cooper, S.-A.
College/School:College of Medical Veterinary and Life Sciences > Institute of Health and Wellbeing > Mental Health and Wellbeing
Journal Name:BMJ Open
Publisher:BMJ Publishing Group
ISSN (Online):2044-6055
Copyright Holders:Copyright © Author(s) (or their employer(s)) 2020
First Published:First published in BMJ Open 10:e034077
Publisher Policy:Reproduced under a Creative Commons license

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Project CodeAward NoProject NamePrincipal InvestigatorFunder's NameFunder RefLead Dept
302957Mental Health Data PathfinderDaniel SmithMedical Research Council (MRC)MC_PC_17217HW - Mental Health and Wellbeing