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…

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: 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…

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…

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: 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: 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…

Background:Historically, there has been higher and earlier mortality among people with intellectual disability as compared to the general population, but there have also been methodological problems and differences in the available studies. Method: Data were drawn from the 2012 National Intellectual Disability Database and the Census in Ireland. A…

Background: This paper reviews what is currently known about mortality among Canadians with intellectual and developmental disabilities and describes opportunities for ongoing monitoring. Methods: In-hospital mortality among adults with intellectual and developmental disabilities in Ontario was examined using hospital data. Mortality was compared…

Background: Although life expectancies in Down syndrome (DS) have doubled over the past 3-4 decades, there continue to be many early deaths. Yet, most research focuses on infant mortality or later adult deaths. Materials and Methods: In this US study, hospital discharge and death records from the state of Tennessee were linked to examine 2046…