The population prevalence of Down’s syndrome in England and Wales in 2011

Abstract

There is uncertainty over the population prevalence of people with Down's syndrome in England and Wales. This study aimed to estimate the population prevalence of Down's syndrome in England and Wales in 2011. A meta-analysis of published survival rates of people with Down's syndrome from 1938 to 2010 was conducted and the results were applied to the estimated numbers of babies born with Down's syndrome since 1938 in England and Wales. An estimated 37 090 people had Down's syndrome in England and Wales in 2011, a population prevalence of 0.66 per 1000 people; 650 under 1, 2673 aged 1-5, 7115 aged 5-18, 12 819 aged 19-40, 10 626 aged 41-55 and 3207 aged 56 and older. The average life expectancy for babies with Down's syndrome born in 2011 was 51 years and the median life expectancy was 58 years. This study provides clarity on the number of people with Down's syndrome in England and Wales. Owing to sudden increases in the survival of babies with Down's syndrome in the 1950s there are a large proportion of people with Down's syndrome who are in their 40s. These people have an increased risk of developing dementia in the future and services should be aware of their potential needs.

Estimation of the number of people with Down syndrome in the United States

“…9 The current model estimated the total number of people with DS in the US (excluding foreign-born people with DS) to be 199,720; the model by de Graaf et al …”

“…As a sensitivity analysis, we estimated outcomes for population prevalence if we had followed other assumptions, including those of previous researchers 8,9 (Supplementary Materials S7 online). Our current model can be applied to predict the number of deaths of people with DS by age group in different calendar years.…”

“…Other researchers replicated this approach for England/Wales, with slightly different assumptions. 9 In the United States, DS birth prevalence was estimated by de Graaf et al 10 at 12.6 per 10,000 (or 1 in 792) as of 2010. However, only a few studies have estimated US population prevalence.…”

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

“…Common causes of ID include genetic and chromosomal disorders -both non-inherited (e.g. Down syndrome) 7 and inherited (e.g. fragile X syndrome) -and non-genetic factors, such as infection and environmental factors.…”

A genetic cause of Alzheimer disease: mechanistic insights from Down syndrome

“…Its prevalence within a given population is influenced by infant mortality rates, access to health care, termination rates, average maternal age 3 and life expectancy. Indeed, despite the increased availability of prenatal diagnosis and access to the option of termination, the global prevalence of DS is rising because of improvements in life expectancy: the number of adults with DS aged over 40 years has doubled in northern Europe since 1990 and, in the United Kingdom, one-third of the estimated 40,000 people with DS are thought to be over 40 years of age 4 .…”