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 school children
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...
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BMJ Publishing Group
2020-08-01
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| author | Angela Henderson Sally-Ann Cooper Deborah Kinnear Craig Melville J P Pell Michael Fleming Gillian S Smith |
| author_facet | Angela Henderson Sally-Ann Cooper Deborah Kinnear Craig Melville J P Pell Michael Fleming Gillian S Smith |
| author_sort | Angela Henderson |
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| description | 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. |
| format | Article |
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| institution | Kabale University |
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| language | English |
| publishDate | 2020-08-01 |
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| spelling | doaj-art-1b2f6e8fd21b4cc1b07c4eb95c6a7ef82024-12-02T08:20:22ZengBMJ Publishing GroupBMJ Open2044-60552020-08-0110810.1136/bmjopen-2019-034077Rates and causes of mortality among children and young people with and without intellectual disabilities in Scotland: a record linkage cohort study of 796 190 school childrenAngela Henderson0Sally-Ann Cooper1Deborah Kinnear2Craig Melville3J P Pell4Michael Fleming5Gillian S Smith6Institute of Health and Wellbeing, University of Glasgow, Glasgow, UK2 Mental Health and Wellbeing, University of Glasgow School of Health and Wellbeing, Glasgow, UKInstitute of Health and Wellbeing, University of Glasgow, Glasgow, UKInstitute of Health and Wellbeing, University of Glasgow, Glasgow, UK2 1 Lilybank Gardens, Institute of Health and Wellbeing, University of Glasgow, Glasgow, UK2 Mental Health and Wellbeing, University of Glasgow School of Health and Wellbeing, Glasgow, UKInstitute of Health and Wellbeing, University of Glasgow, Glasgow, UKObjectives 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.https://bmjopen.bmj.com/content/10/8/e034077.full |
| spellingShingle | Angela Henderson Sally-Ann Cooper Deborah Kinnear Craig Melville J P Pell Michael Fleming Gillian S Smith 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 school children BMJ Open |
| title | 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 school children |
| title_full | 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 school children |
| title_fullStr | 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 school children |
| title_full_unstemmed | 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 school children |
| title_short | 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 school children |
| title_sort | 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 school children |
| url | https://bmjopen.bmj.com/content/10/8/e034077.full |
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