Early death and causes of death of people with intellectual disabilities: A systematic review

O’Leary, Lisa; Cooper, Sally‐Ann; Hughes-McCormack, Laura Anne

doi:10.1111/jar.12417

Cited by 208 publications

(215 citation statements)

References 49 publications

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“…Synthesis of these studies also revealed that individuals with Down syndrome were less likely to die from causes that could be prevented through public health interventions such as certain cancers and accidents. These findings echoed findings from those of another systematic review that revealed that individuals with intellectual disabilities in general were more likely to die from amenable than preventable causes (O'Leary, Cooper, & Hughes‐McCormack, ).…”

Section: Discussionsupporting

confidence: 69%

Early death and causes of death of people with Down syndrome: A systematic review

O’Leary

Hughes-McCormack

Dunn

et al. 2018

Research Intellect Disabil

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Section: Discussionsupporting

confidence: 69%

Early death and causes of death of people with Down syndrome: A systematic review

O’Leary

Hughes-McCormack

Dunn

et al. 2018

Research Intellect Disabil

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“…Individuals with intellectual disabilities (IDs) have more health problems, a poorer general health status, and a shorter life expectancy than individuals in the general population . Coronary heart and respiratory diseases have been identified as the leading causes of death in individuals with IDs .…”

Section: Introductionmentioning

confidence: 99%

Prevalence of drug use among adults with intellectual disabilities compared with drug use in the general population

Hove¹,

Biringer²,

Havik

et al. 2019

Pharmacoepidemiology and Drug

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Purpose Individuals with intellectual disabilities (IDs) have more health problems, a poorer general health, and a shorter life expectancy than individuals in general. High rates of drug use in IDs have been reported. Despite the increasing interest in health problems in individuals with IDs, little is known about their drug use. Method Drug use in a community sample of adults with IDs (N = 593) was compared with dispensed drugs in a time‐, age‐, and region‐matched comparison group of adults in Western Norway (N = 289 325). A logistic regression model was employed by using the main group effect to describe and analyze the differences between the ID sample and the comparison sample and by using the interaction term (group × age) to describe the rate change differences from the reference age (18‐30 years) between the two groups. Results Total drug use in the ID sample was 62% compared with 50% in the reference sample (P = 0.0001). The high prevalence of drugs for the nervous system (ATC N) in the ID sample (50%) explained the difference. From age 51 and over, the increase in the drug use rate for the cardiovascular disease was significantly lower in the ID sample than in the reference sample (P value range: 0.002‐0.019). Conclusions Adults with IDs use more drugs than adults in general. However, the findings showed lower rates of drug use in the ID sample than in the general population for drugs targeting diseases that are the leading causes of death in individuals with IDs.

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“…Respiratory disease and circulatory diseases are the main causes of death of people with ID (O'Leary et al . ). The life expectancy of people with ID has increased over the past few decades, with a shift from sudden deaths and brief illnesses to more lengthy illness processes.…”

Section: Introductionmentioning

confidence: 97%

“…People with intellectual disabilities (ID) have 2.5 times as many health problems as people without ID (van Schrojenstein Lantman-De Valk et al 2000). Respiratory disease and circulatory diseases are the main causes of death of people with ID (O'Leary et al 2018). The life expectancy of people with ID has increased over the past few decades, with a shift from sudden deaths and brief illnesses to more lengthy illness processes.…”

Section: Introductionmentioning

confidence: 99%

Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews

Voss

Vogel²,

Wagemans

et al. 2019

J intellect Disabil Res

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Background Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). Method Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the ‘surprise question’, and 15 who had died after an identifiable period of illness. Additional pre‐structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). Results For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do‐not‐attempt‐resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life‐sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. Conclusions Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.

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Early death and causes of death of people with intellectual disabilities: A systematic review

Abstract: Improved health care, including anticipatory care such as health checks, and initiatives addressing most relevant lifestyle behaviours and health risks are indicated.

Cited by 208 publications

References 49 publications

Early death and causes of death of people with Down syndrome: A systematic review

Early death and causes of death of people with Down syndrome: A systematic review

Prevalence of drug use among adults with intellectual disabilities compared with drug use in the general population

Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews

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