Health indicators for persons with intellectual disabilities in Europe

INTRODUCTION: People with intellectual disabilities comprise an estimated five million persons in the EU 27 member states. Evidence suggests that people in this group show negative disparities in health status and in access to optimal health care. They are more likely to incur secondary health conditions and thus report increased morbidity and poorer health status. Higher rates of obesity, mental health disorders, and lower rates of cardiovascular fitness, vaccination levels, and preventative health screening have been identified among people with intellectual disabilities. Epilepsy and mental health difficulties have a high rate of prevalence. To identify health disparities, measures to gather comparable health data are required. This presentation outlines the procedures adopted to develop and implement a set of health indicators for persons with intellectual disabilities in Europe. METHODS: With support from the DG-public health of the EU, the Pomona group developed a set of 18 health indicators for persons with intellectual disabilities (2002–2004). Partners operationalized these indicators in a survey instrument, translated this into 14 languages, secured ethical approval, carried out a pilot study and gathered data among n=1269 participants. RESULTS: Most (77%) lived independently or semi-independently, with their families or in group homes with fewer than 16 residents. Countries varied in the proportion of persons living in hospitals or nursing homes. About one-half of participants were in the ‘overweight’ or ‘obese’ categories. Rates of health checks were not optimal, especially for gender-specific conditions. DISCUSSION: Results are discussed in the light of priorities for gathering and maintaining health information systems that can help to identify health needs of persons in this segment of the population, and efforts at European level to decrease health inequalities.