RT Journal Article
SR Electronic
T1 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
JF BMJ Open
JO BMJ Open
FD British Medical Journal Publishing Group
SP e061636
DO 10.1136/bmjopen-2022-061636
VO 12
IS 9
A1 Hughes-McCormack, Laura Anne
A1 Rydzewska, Ewelina
A1 Cooper, Sally-Ann
A1 Fleming, Michael
A1 Mackay, Daniel
A1 Dunn, Kirsty
A1 Ward, Laura
A1 Sosenko, Filip
A1 Barlow, Fiona
A1 Miller, Jenny
A1 Symonds, Joseph D
A1 Jani, Bhautesh D
A1 Truesdale, Maria
A1 Cairns, Deborah
A1 Pell, Jill
A1 Henderson, Angela
A1 Melville, Craig
YR 2022
UL http://bmjopen.bmj.com/content/12/9/e061636.abstract
AB 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.No data are available.