Background: Rates of death and avoidable deaths are reportedly higher among people with intellectual and developmental disabilities. This study contributes to our understanding of how mortality and intellectual and development disabilities are associated. Method: General population and intellectual and developmental disabilities adult cohorts were…

Objectives: Characterise the circumstances associated with death during admission of adults with Down syndrome (DS) and to identify predictors of mortality. Patients and Methods: Observational study based on data on all emergent admissions of adults with DS to hospitals of the Spanish National Health System between 1997 and 2014. We analysed…

Objectives: To describe the clinical and epidemiological characteristics of adult patients with Down syndrome admitted to Spanish hospitals between 1997 and 2014. Secondary goals were to study trend changes over time, and to analyse differences between patients admitted to medical and surgical departments. Patients and Methods: Retrospective…

Background: Population-based data are presented on the nature of dying in intellectual disability services. Methods: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths,…

Background: Overweight/obesity and poor physical fitness are two prevalent lifestyle-related problems in older adults with intellectual disabilities, which each require a different approach. To improve healthy ageing, we assessed whether fatness or fitness is more important for survival in older adults with intellectual disabilities. Methods: In…

Background: People with intellectual disability die younger than their non-disabled peers. In recent years, greater attention has been paid to closing the gap. However, evidence that this is being achieved is limited by the dearth of longitudinal, national data. Method: Over 4,000 decedents identified in the Irish National Intellectual Disability…

Background: Death of people with intellectual disabilities is considered to be earlier than for the general population. Methods: Databases were searched for key words on intellectual disabilities and death. Strict inclusion/exclusion criteria were used. Information was extracted from selected papers, tabulated and synthesized. Prospero…

This paper reviews why an understanding of mortality data in general, and in relation to people with intellectual disabilities in particular, is an important area of concern, and introduces the papers in this Special Edition.

Background: Mortality studies can help reduce health inequalities by informing public policy through a better understanding of causes of death and comorbidities. Mortality studies often rely on Medical Certificates of Cause of Death (MCCD) for data. Method: A systematic review was undertaken to identify the extent and nature of issues in recording…

Background: It is thought that people with Down syndrome die younger than the general population, but that survival rates are improving. Methods: Five databases were searched for keywords related to intellectual disabilities, Down syndrome and mortality. Strict inclusion criteria were applied. Information from 34 selected studies was tabulated,…

Background: Little information exists on health of children with developmental disabilities (DDs) in the Canadian province of Manitoba. Method: The present authors linked 12 years of administrative data and compared health status, changes in health and access to health and social services between children with (n = 1877) and without (n = 5661) DDs…

Background: This study presents age group-specific mortality rates and the average life expectancy of people with intellectual disabilities in Germany. Method: For two samples from Westphalia-Lippe and Baden-Wuerttemberg, person-related data for the years 2007-2009 were analysed. Age group-specific mortality rates were estimated by exponential…

Objectives: The main objective of the study was to compare mortality for people with an intellectual disability (ID) to the general population in New South Wales (NSW), Australia. A second objective was to provide mortality data for people with an intellectual disability from NSW in a standardized format, which allows for international comparisons…

Background: Monitoring population trends including mortality within subgroups such as people with intellectual and developmental disabilities and between countries provides crucial information about the population's health and insights into underlying health concerns and the need for and effectiveness of public health efforts. Methods: Data from…

Background: At present, there is limited statistical information about mortality of people with intellectual disabilities in England. This study explores the data that are currently available. Materials and Methods: Four recent sources of data about mortality of people with intellectual disabilities in England are reviewed: the Confidential…