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

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 Scotlands 2011 Census to 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/ 7,247 (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). SMR for children/young people with, versus those without, intellectual disabilities were 10.7 for all causes (95% confidence interval (CI)=9.47-12.1), 5.17 for avoidable death (CI=4.19-6.37), 2.3 for preventable death (1.6-3.2), and 16.1 for treatable death (CI=12.5-20.8). SMRs were highest for children (27.4, CI=20.6-36.3) aged 5-9 years, and lowest for young people (6.6, CI=5.1-8.6) 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 ICD-10 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 health-care to reduce treatable mortality should be a priority for children/young people with intellectual disabilities. Examples include improved epilepsy management and risk assessments, and co-ordinated multi-disciplinary actions to reduce aspiration/reflux/choking and respiratory infection. This is necessary across all neighbourhoods.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

This work was supported by the UK Medical Research Council, grant number: MC_PC_17217), Baily Thomas Charitable (grant number: N/A) Fund and the Scottish Government via the Scottish Learning Disabilities Observatory.

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

Approval was gained from Scotland's Public Benefit and Privacy Panel for Health (reference: 1819-0051), Scotland's Statistics Public Benefit and Privacy Panel (1819-0051), and the University of Glasgow's College of Medical, Veterinary, and Life Sciences Ethical Committee (reference: 200180081). Data sharing agreements are in place with the data controllers of all the linked datasets.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable.

Yes

Data Availability

No data are available. This study linked patient information held across several administrative health datasets within Information Services Division (ISD) of NHS National Services Scotland (NSS), with externally held data held by the Scottish Government (Scotlands 2011 Census) and National Records of Scotland. Linkage and de-identification of data was performed by ISD. A data processing agreement between NHS NSS and University of Glasgow and a data-sharing agreement between the Scottish Government and University of Glasgow were drafted. The University of Glasgow were authorised to receive record-linked data controlled and held by ISD within NSS, via access through the national safe haven. The ISD Statistical Disclosure Control Protocol was followed. It is therefore not possible.

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