Developing health indicators for people with intellectual disabilities. The method of the Pomona project.
A 2007 expert panel gave us 18 ready-to-use health indicators so adults with ID can be counted the same way as everyone else in Europe.
01Research in Context
What this study did
Pitetti et al. (2007) ran a Europe-wide expert panel. They asked doctors, nurses, and disability workers what health facts matter most for adults with intellectual disability.
After three voting rounds the group agreed on 18 core items. The list lines up with standard European health surveys so countries can compare numbers.
What they found
The final 18-item set covers things like vision, hearing, obesity, diabetes, depression, and epilepsy. Each item has a plain definition and a way to score it.
The panel showed the list is practical for routine use in clinics and large registries.
How this fits with other research
Martin et al. (1997) counted high rates of vision, hearing, and dementia in Dutch residential homes. Pitetti et al. (2007) turned those problem counts into the 18-item checklist you can track today.
Smit et al. (2019) copied the same voting method but built behavioral indicators for ICD-11 instead of health. Same recipe, new dish.
Sandberg et al. (2026) later used national registries to show most diagnoses rise with ID, yet cancer looks lower—probably missed. The Pomona set is now the yardstick those registries can use.
Why it matters
You now have a free, ready-made health screen that speaks the same language as European health surveys. Use the 18 items during intake, annual reviews, or when you train staff. If your state wants ID health equity data, hand them this set—no extra jargon, no reinvented wheel.
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02At a glance
03Original abstract
AIM: Recently, attention has focused on the health inequalities experienced by people with intellectual disabilities (ID) when compared with the general population. To inform policies aimed at equalizing health opportunities, comparable evidence is needed about the aspects of their health that may be amenable to intervention. METHOD: Applying the framework of the European Community Health Indicators (ECHI) for the general population, the Pomona group developed a set of health indicators reflecting aspects of the health of people with ID: socio-demographic data, health status, health determinants and health systems. RESULTS: This paper documents the procedures that partners carried out in 13 European countries. The process comprised a search for evidence in published literature; consultation with advocates, family members and health professionals; and analyses of national and international databases. Indicators were selected if they were appraised as important, useful, measurable and if resulting data would enable comparisons between the health of people with ID and that of the general population. CONCLUSION: The thus developed indicator set that is aligned with ECHI will permit investigators to compare key aspects of health of people with ID with those of people in the general population within Europe. The final set of 18 indicators will be applied in the Pomona 2 project (2005-08) to gather information about the health of samples of adults in 14 participating European countries.
Journal of intellectual disability research : JIDR, 2007 · doi:10.1111/j.1365-2788.2006.00890.x