Life expectancy and causes of death of people with learning disabilities: a systematic review
Although the life expectancy of people with learning disabilities has increased in recent years, it is still considered to remain lower than that of the general population. A systematic review was undertaken in order to identify the gaps and strengths of this evidence.
Aims and objectives
The aim of this systematic review is to identify the causes of death and life expectancy of people with learning disabilities.
The review was registered with the International Prospective Register of Systematic Reviews (Prospero), registration number CRD42015020161. Five electronic databases (CINAHL, MEDLINE, PsychINFO, Web of Science, and EMBASE) were searched for key words relating to intellectual disability AND death.
Titles and abstracts were assessed using strict inclusion/exclusion criteria (5% were assessed by a second researcher). Full papers were then assessed for eligibility. Information relating to design, demographics, data source, method of analysis, findings and limitations was extracted, tabulated and reviewed using narrative analysis.
A total of 17,828 potentially relevant articles were identified from database searching. N=25 of these studies met the inclusion criteria. Analysis of these studies revealed that individuals with learning disabilities had lower life expectancy than the general population. Higher mortality rates were pronounced in specific subgroups such as females and individuals with severe/profound learning disabilities. The majority of studies were limited by the fact that they relied on administration data and did not undertake age-matched comparisons with the general population.
Studies reviewed demonstrate a lower life expectancy among the learning disability population, in comparison to the general population. Further population based and age matched cohort studies are needed in order to ascertain life expectancy of the entire learning disability population.
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All cause and cause-specific mortality in children and young people with learning disabilities and/or autism in Scotland
Studies have shown that adults and children with learning disabilities and/or autism die prematurely, often from causes that are preventable or amenable to treatment, compared to the general population. This study aims to examine all cause and cause-specific mortality in children and young people with learning disabilities and/or autism in Scotland.
Scotland’s Pupil Census and the National Records of Scotland: Death Records will be linked and analysed for this study. Standardised mortality ratios will be reported.
Data collation and linkage is in progress. When this is completed, descriptive statistics and relevant statistics will be provided.
This will be the first study to analyse the causes of death in children and young people with intellectual disabilities and/or autism in Scotland. There is a likelihood that the causes of mortality in children and young people in this population will differ from that of adults and children in the general population. This study will provide the platform for future work in reducing the risk of death in children and young people learning disabilities and/or autism as well as reducing the inequalities experienced by this population.
For further information on this project, please contact Marian Okon
Life expectancy and causes of death of people with Down Syndrome: A systematic review
People with Down Syndrome are thought to have a lower life expectancy and different cause of death profile compared to the general population. A systematic review was undertaken to evaluate this evidence.
The review was registered with the International Prospective Register of Systematic Reviews. Five electronic databases were searched for key words relating to Intellectual disability/Down Syndrome AND death. Titles, abstracts and full papers were assessed using strict inclusion/exclusion criteria. 5% were assessed by a second researcher. Information from the eligible studies was extracted, tabulated and reviewed using narrative analysis.
37 /19,111 potentially relevant articles met the inclusion criteria. Down Syndrome life expectancy was up to 28 years lower than the general population. Life expectancy increased at a faster rate over time in the Down Syndrome population, compared to the general population. Infant mortality was significantly higher in the Down Syndrome population. Low birth weight, congenital heart defect, black and minority ethnicity, and comorbidities were associated with lower life expectancy and higher mortality rates. Respiratory illness and congenital heart anomalies were the leading causes of death in most studies, and more common than in the general population. Most studies were limited by relying on administration data, and death certificates (known to have potential inaccuracies), and not undertaking age gender matched general population comparisons.
People with Down Syndrome have a shorter life expectancy, and a different cause of death profile than the general population, but robust comparative data is surprisingly lacking. The Scottish Learning Disabilities Observatory is investigating this further.
For further information on this project, please contact Lisa.O'Leary