Monitoring the prevalence of severe intellectual disability in children across Europe: feasibility of a common database

Abstract

Aim Our aim was to study the feasibility of creating a framework for monitoring and undertaking collaborative research on intellectual disability at the European level, based on existing databases of children with such disability. Method The characteristics of five existing European intellectual disability databases from four countries (Iceland, Latvia, Ireland, and two in France), were discussed on the basis of ideal criteria set by a working group on childhood intellectual disability as part of the Surveillance of Cerebral Palsy in Europe Network (SCPE‐NET). Mean prevalence values for severe intellectual disability for the birth years 1990 till 2002 were compared across databases. Results Methods of case recruitment and diagnosis differed across databases, but classification of intellectual disability and completeness were similar. Severe intellectual disability (IQ<50) prevalence estimates were significantly (p<0.001) different across databases (south‐east France: 3.3 out of 1000; south‐west France: 3.0 out of 1000; Latvia: 3.9 out of 1000; Ireland: 5.0 out of 1000; and Iceland 5.1 out of 1000). Interpretation In spite of differences in diagnosis and case inclusion across databases, the construction of a common database for severe intellectual disability was deemed feasible through harmonization of certain criteria, such as age, and through restriction to those with severe intellectual disability.

Low Apgar scores at both one and five minutes are associated with long‐term neurological morbidity

“…During the first few years of life only severe impairments can be diagnosed, as mild IDs are only found at school age. A European study showed that the prevalence of severe IDs, defined as an intelligence quotient of less than 50, was 3–5 per 1000 children aged six to eight years . The cumulative prevalence of ID was 0.5% in children at 4.5 years of age in Finland, when aetiological diagnoses were included .…”

Prevalence of autism and attention‐deficit–hyperactivity disorder in Down syndrome: a population‐based study

“…It is established that WPPSI–III can be used for older children with intellectual disability. Intellectual disability was classified into mild (IQ 50–70), moderate (IQ 35–50), severe (IQ 20–35), and profound (IQ<20) intellectual disability …”

“…Intellectual disability was classified into mild (IQ 50-70), moderate (IQ 35-50), severe (IQ 20-35), and profound (IQ<20) intellectual disability. 33 An adaptive test was performed for all children who had a cognitive test within the study. The Adaptive Behavior Assessment System-II (ABAS-II) was used.…”

A case-study of policy change in residential service provision for adult persons with intellectual disability in Ireland

“…The Republic of Ireland is unique in Europe in having a national database of adult persons with intellectual disability in receipt of specialist services or who could benefit from them (van Bakel et al, ). The Irish National Intellectual Disability Database (NIDD) was established in 1995 to ensure that information is available to assist the Department of Health with the planning and provision of appropriate services designed to meet the changing needs of people with intellectual disabilities and their families.…”

“…However, perhaps a major impediment in many countries has been the absence of national systems for documenting the type of services provided and the characteristics of people in receipt of them. Such a system would also allow changes over time to be monitored (van Bakel et al, ). Again, stand alone research projects could not realistically gather such national data, even if all data protection and ethical issues were addressed.…”