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

TY - JOUR

T1 - Rates, causes and predictors of all-cause and avoidable mortality in 163 686 children and young people with and without intellectual disabilities

T2 - a record linkage national cohort study

AU - Hughes-Mccormack, Laura Anne

AU - Rydzewska, Ewelina

AU - Cooper, Sally Ann

AU - Fleming, Michael

AU - MacKay, Daniel

AU - Dunn, Kirsty

AU - Ward, Laura

AU - Sosenko, Filip

AU - Barlow, Fiona

AU - Miller, Jenny

AU - Symonds, Joseph D.

AU - Jani, Bhautesh D.

AU - Truesdale, Maria

AU - Cairns, Deborah

AU - Pell, Jill

AU - Henderson, Angela

AU - Melville, Craig

N1 - Funding Information: 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. Copyright: © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.

PY - 2022/9/16

Y1 - 2022/9/16

N2 - Objectives: To investigate mortality rates and associated factors, and avoidable mortality in children/young people with intellectual disabilitiesDesign: 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.

AB - Objectives: To investigate mortality rates and associated factors, and avoidable mortality in children/young people with intellectual disabilitiesDesign: 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.

KW - EPIDEMIOLOGY

KW - Epilepsy

KW - Gastrointestinal infections

KW - Respiratory infections

UR - https://www.scopus.com/pages/publications/85138142831

U2 - 10.1136/bmjopen-2022-061636

DO - 10.1136/bmjopen-2022-061636

M3 - Article

C2 - 36113944

AN - SCOPUS:85138142831

SN - 2044-6055

VL - 12

JO - BMJ Open

JF - BMJ Open

IS - 9

M1 - e061636

ER -