11.H. Workshop: Epidemiology of diseases and health inequalities in people with and without intellectual disabilities
Authors:   Organised by: Radboud University Medical Center (Netherlands),   Chair persons: Maarten Cuypers (Netherlands)
Published: October 2021

All people have a right to equal healthcare without discrimination on the basis of disabilities. In practice, however, health inequalities still remain. Ideally we would define future public health having sufficient attention to minority groups and their specific needs. One of these groups is people with intellectual disabilities (ID), defined by severe limitations in adaptive and functional behaviour. As a result of these limitations, people with ID suffer from worse health, higher hospitalisation rates and higher premature mortality compared to people without ID. In reducing these health inequalities acquiring accurate information on disease epidemiology in people with ID compared to those without ID is crucial. However, this crucial information is still lacking. This workshop will dive into disease epidemiology in people with ID by highlighting different aspects of health and the difficulties that arise when researching people with ID. First, It has been proven difficult to identify ID in existing data sources. ID-diagnoses in medical records are not too reliable, physicians do not always recognise IDs, or people are embarrassed of their ID-diagnosis. By gaining information on received services or supports specifically for people with ID a more complete representation of the ID-population is gained. Second, prevalence rates on chronic diseases in people with ID are often inconsistent across the literature, probably due to different age and sex patterns of chronic diseases and chronic comorbidities compared to people without ID, but these patterns are often not taken into account. By reporting on chronic disease prevalence and comorbidity patterns in people with versus without ID, a novel insight is gained in comparative epidemiology of chronic diseases of people with and without ID. Third, although it is known that people with mild ID suffer more mental health disorders dan people with no ID, exact prevalence rates and data on the care provided to these people in mental health services is missing. A retrospect database study performed in Dutch mental health care gives insight in this knowledge gap, not only for those people whom are recorded with their mild ID in these mental health services, but also for those people who were not recorded as such. Fourth, the current pandemic of a novel infectious disease stresses the strong need for accurate knowledge of disease epidemiology, particularly concerning high-risk groups such as people with ID. A large-scale registration of COVID-19 in people with ID living in residential settings was developed in the Netherlands, to provide necessary insight in the medical impact of COVID-19 among people with ID and inform policy makers and care providers on specific risks and consequences of COVID-19 in the ID population as compared with the general population.

Key messages

Insight in disease epidemiology and disease care in people with intellectual disabilities compared to people without intellectual disabilities is crucial in reducing health inequalities. Although it is difficult to identify all people with intellectual disabilities in data sources, using multiple methods and data sources results in a more complete overview of this group of people.