Skip to content

Research at St Andrews

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

Research output: Contribution to journalArticle

Standard

Rates, causes, place and predictors of mortality in adults with intellectual disabilities with and without Down syndrome : cohort study with record linkage. / Cooper, Sally-Ann; Allan, Linda; Greenlaw, Nicola; McSkimming, Paula; Jasilek, Adam; Henderson, Angela; McCowan, Colin; Kinnear, Deborah; Melville, Craig.

In: BMJ Open, Vol. 10, No. 5, e036465, 17.05.2020.

Research output: Contribution to journalArticle

Harvard

Cooper, S-A, Allan, L, Greenlaw, N, McSkimming, P, Jasilek, A, Henderson, A, McCowan, C, Kinnear, D & 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, vol. 10, no. 5, e036465. https://doi.org/10.1136/bmjopen-2019-036465

APA

Cooper, S-A., Allan, L., Greenlaw, N., McSkimming, P., Jasilek, A., Henderson, A., McCowan, C., Kinnear, D., & 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(5), [e036465]. https://doi.org/10.1136/bmjopen-2019-036465

Vancouver

Cooper S-A, Allan L, Greenlaw N, McSkimming P, Jasilek A, Henderson A et al. Rates, causes, place and predictors of mortality in adults with intellectual disabilities with and without Down syndrome: cohort study with record linkage. BMJ Open. 2020 May 17;10(5). e036465. https://doi.org/10.1136/bmjopen-2019-036465

Author

Cooper, Sally-Ann ; Allan, Linda ; Greenlaw, Nicola ; McSkimming, Paula ; Jasilek, Adam ; Henderson, Angela ; McCowan, Colin ; Kinnear, Deborah ; Melville, Craig. / Rates, causes, place and predictors of mortality in adults with intellectual disabilities with and without Down syndrome : cohort study with record linkage. In: BMJ Open. 2020 ; Vol. 10, No. 5.

Bibtex - Download

@article{2804ffdd3bc04e729b09e9e4f750fae0,
title = "Rates, causes, place and predictors of mortality in adults with intellectual disabilities with and without Down syndrome: cohort study with record linkage",
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 {\textquoteleft}Down syndrome{\textquoteright}, 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.",
author = "Sally-Ann Cooper and Linda Allan and Nicola Greenlaw and Paula McSkimming and Adam Jasilek and Angela Henderson and Colin McCowan and Deborah Kinnear and Craig Melville",
note = "Funding: UK Medical Research Council, grant number: MC_PC_17217), and the Scottish Government via the Scottish Learning Disabilities Observatory. ",
year = "2020",
month = may,
day = "17",
doi = "10.1136/bmjopen-2019-036465",
language = "English",
volume = "10",
journal = "BMJ Open",
issn = "2044-6055",
publisher = "BMJ Publishing Group Ltd",
number = "5",

}

RIS (suitable for import to EndNote) - Download

TY - JOUR

T1 - Rates, causes, place and predictors of mortality in adults with intellectual disabilities with and without Down syndrome

T2 - cohort study with record linkage

AU - Cooper, Sally-Ann

AU - Allan, Linda

AU - Greenlaw, Nicola

AU - McSkimming, Paula

AU - Jasilek, Adam

AU - Henderson, Angela

AU - McCowan, Colin

AU - Kinnear, Deborah

AU - Melville, Craig

N1 - Funding: UK Medical Research Council, grant number: MC_PC_17217), and the Scottish Government via the Scottish Learning Disabilities Observatory.

PY - 2020/5/17

Y1 - 2020/5/17

N2 - 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.

AB - 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.

U2 - 10.1136/bmjopen-2019-036465

DO - 10.1136/bmjopen-2019-036465

M3 - Article

VL - 10

JO - BMJ Open

JF - BMJ Open

SN - 2044-6055

IS - 5

M1 - e036465

ER -

Related by author

  1. Earlier diagnosis of lung cancer in a randomised trial of an autoantibody blood test followed by imaging

    Sullivan, F. M., Mair, F. S., Anderson, W., Armory, P., Briggs, A., Chew, C., Dorward, A., Haughney, J., Hogarth, F., Kendrick, D., Littleford, R., Mcconnachie, A., McCowan, C., Mcmeekin, N., Patel, M., Rauchhaus, P., Ritchie, L., Robertson, C., Robertson, J., Robles-zurita, J. & 8 others, Sarvesvaran, J., Sewell, H., Sproule, M., Taylor, T., Tello, A., Treweek, S., Vedhara, K. & Schembri, S., 30 Jul 2020, In : European Respiratory Journal. Early View, 2000670.

    Research output: Contribution to journalArticle

  2. Cost burden of Clostridioides difficile infection to the health service: a retrospective cohort study in Scotland

    Robertson, C., Pan, J., Kavanagh, K., Ford, I., McCowan, C., Bennie, M., Marwick, C. & Leanord, A., 24 Jul 2020, In : Journal of Hospital Infection. In press

    Research output: Contribution to journalArticle

  3. Linkage of national health and social care data: a cross-sectional study of multimorbidity and social care use in people aged over 65 years in Scotland

    Henderson, D. A. G., Atherton, I., McCowan, C., Mercer, S. W. & Bailey, N., 16 Jul 2020, In : Age and Ageing. Advance Article, 7 p., afaa134.

    Research output: Contribution to journalArticle

  4. Risk factors associated with biochemically detected and hospitalised acute kidney injury in patients prescribed renin angiotensin system inhibitors

    Mark, P. B., Papworth, R., Ramparsad, N., Tomlinson, L. A., Sahwney, S., Black, C., McConnachie, A. & McCowan, C., 26 Jan 2020, In : British Journal of Clinical Pharmacology. 86, 1, p. 121-131 11 p.

    Research output: Contribution to journalArticle

  5. Why colorectal screening fails to achieve the uptake rates of breast and cervical cancer screening: a comparative qualitative study

    Kotzur, M., McCowan, C., Macdonald, S., Wyke, S., Gatting, L., Campbell, C., Weller, D., Crighton, E., Steele, R. & Robb, K., 26 Dec 2019, In : BMJ Quality & Safety. Online First

    Research output: Contribution to journalArticle

Related by journal

  1. A cohort study of high maternal Body Mass Index and the risk of adverse pregnancy and delivery outcomes in Scotland

    Doi, L., Williams, A. J., Marryat, L. & Frank, J., 20 Feb 2020, In : BMJ Open. 10, 2, 9 p., e026168.

    Research output: Contribution to journalArticle

  2. Accuracy and consequences of using trial-of-antibiotics for TB diagnosis (ACT-TB study): protocol for a randomised controlled clinical trial

    Divala, T. H., Fielding, K. L., Sloan, D. J., French, N., Nliwasa, M., MacPherson, P., Kandulu, C. C., Chiume, L., Chilanga, S., Ndaferankhande, M. J. & Corbett, E. L., Mar 2020, In : BMJ Open. 10, 3, 10 p., e033999.

    Research output: Contribution to journalArticle

ID: 268010217

Top