Rates, causes, place, and predictors of mortality in adults with intellectual disabilities with and without Down syndrome: cohort study with record linkage

Cooper, S.-A. , Allan, L., Greenlaw, N., McSkimming, P., Jasilek, A., Henderson, A. , McCowan, C. , Kinnear, D. and Melville, C. (2020) Rates, causes, place, and predictors of mortality in adults with intellectual disabilities with and without Down syndrome: cohort study with record linkage. BMJ Open, 10, e03646. (doi: 10.1136/bmjopen-2019-036465) (PMID:32423940) (PMCID:PMC7239521)

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Abstract

Objectives: To investigate mortality in adults with intellectual disabilities: rates, causes, place, demographic and clinical predictors. Design: Cohort study with record linkage to death data. Setting: General community. Participants: 961/1023 (94%) adults (16–83 years; mean=44.1 years; 54.6% male) with intellectual disabilities, clinically examined in 2001–2004; subsequently record-linked to their National Health Service number, allowing linkage to death certificate data, 2018. Outcome measures: Standardised mortality ratios (SMRs), underlying and all contributing causes of death, avoidable deaths, place, and demographic and clinical predictors of death. Results: 294/961 (30.6%) had died; 64/179 (35.8%) with Down syndrome, 230/783 (29.4%) without Down syndrome. SMR overall=2.24 (1.98, 2.49); Down syndrome adults=5.28 (3.98, 6.57), adults without Down syndrome=1.93 (1.68, 2.18); male=1.69 (1.42, 1.95), female=3.48 (2.90, 4.06). SMRs decreased as age increased. More severe intellectual disabilities increased SMR, but ability was not retained in the multivariable model. SMRs were higher for most International Statistical Classification of Diseases and Related Health Problems, 10th Revision chapters. For adults without Down syndrome, aspiration/reflux/choking and respiratory infection were the the most common underlying causes of mortality; for Down syndrome adults ‘Down syndrome’, and dementia were most common. Amenable deaths (29.8%) were double that in the general population (14%); 60.3% died in hospital. Mortality risk related to percutaneous endoscopic gastrostomy/tube fed, Down syndrome, diabetes, lower respiratory tract infection at cohort-entry, smoking, epilepsy, hearing impairment, increasing number of prescribed drugs, increasing age. Bowel incontinence reduced mortality risk. Conclusions: Adults with intellectual disabilities with and without Down syndrome have different SMRs and causes of death which should be separately reported. Both die younger, from different causes than other people. Some mortality risks are similar to other people, with earlier mortality reflecting more multimorbidity; amenable deaths are also common. This should inform actions to reduce early mortality, for example, training to avoid aspiration/choking, pain identification to address problems before they are advanced, and reasonable adjustments to improve healthcare quality.

Item Type:Articles
Status:Published
Refereed:Yes
Glasgow Author(s) Enlighten ID:Mccowan, Professor Colin and Kinnear, Dr Deborah and Henderson, Mrs Angela and Mcskimming, Mrs Paula and Melville, Professor Craig and Cooper, Professor Sally-Ann and Allan, Mrs Linda and Greenlaw, Miss Nicola
Authors: Cooper, S.-A., Allan, L., Greenlaw, N., McSkimming, P., Jasilek, A., Henderson, A., McCowan, C., Kinnear, D., and Melville, C.
College/School:College of Medical Veterinary and Life Sciences > Institute of Health and Wellbeing > Mental Health and Wellbeing
College of Medical Veterinary and Life Sciences > Institute of Health and Wellbeing > Robertson Centre
Journal Name:BMJ Open
Publisher:BMJ Publishing Group
ISSN:2044-6055
ISSN (Online):2044-6055
Published Online:17 May 2020
Copyright Holders:Copyright © Author(s) (or their employer(s)) 2020
First Published:First published in BMJ Open 10:e03646
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