POMONA – HEALTH INDICATORS FOR PEOPLE WITH INTELLECTUAL DISABILITIES

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POMONA is a European Commission public-health funded project that aims to identify health indicators for people with intellectual disability. POMONA was officially launched in November 2002 and is being coordinated by Professor Patricia Noonan Walsh, Centre for Disability Studies, University College Dublin; Professor Mike Kerr, University of Wales College of Medicine; and Dr Henny van Schrojenstein Lantman-de Valk, University of Maastricht. Representatives from nine other member states comprise the POMONA partnership: Dr Germain Weber, University of Vienna (Austria); Mr Frank Ulmer Jørgensen, Landsforeninger LEV (Denmark); Dr Tuomo Määtta, Service Centre of Kuysanmaki (Finland); Professor Charles Aussillous, Peyre Plantade (France); Professor Meindert Haveman, University of Dortmund (Germany); Dott. Serafino Buono, OASI (Italy); Dr Raymond Ceccotto, Fondation Association des Parents d’Enfants Mentalement Handicapes (Luxembourg); Dr Luis Salvador, University of Cadiz (Spain); and Dr Monica Björkman, Landstingets Hjärnskadecenter (Sweden).

What is a health indicator?

The World Health Organisation (WHO 2002) define a ‘health indicator’ as ‘a variable, applicable to a health or health-related situation, with characteristics of quality, quantity and time used to measure, directly or indirectly, changes in a situation and to appreciate the progress made in addressing it. It also provides a basis for developing adequate plans for improvement.’

WHO’s recent research monitoring reproductive health (see WHO website) provides a useful example of the role of indicators in health research. WHO identified three main types of health indicators: those that focus on the occurrence of an event (e.g. the onset of seizure disorder), those that focus on the prevalence of a characteristic of a person (e.g. the percentage of people with hearing impairment), and those that focus on the prevalence of a characteristic in a health facility (e.g. the number of doctors who have special training in good practice treating people with intellectual disability). Having identified appropriate health indicators for the population of interest, the information gleaned from these indicators can then be used in a variety of ways. Firstly, health indicators can monitor changes in health status over time (e.g. the changing proportion of persons receiving a specific treatment); secondly, health indicators can monitor differences between population subgroups (e.g. the proportion of people from different backgrounds receiving education); thirdly, health indicators can monitor progress towards targets (e.g. reduction in unhealthy behaviours such as smoking); and finally, health indicators can monitor differences between health facilities in different geographical areas (e.g. the geographical availability of specific services).

Why do we need to identify health indicators for people with intellectual disability?

A set of health indicators has previously been identified for the general population through the work of the European Community Health Indicators (ECHI) team. The ECHI Report, published in 2001 under the auspices of the European Community, classified health indicators under four key categories: (i) Demography and socio-economic factors (e.g. the proportion of the population aged over 65 years), (ii) Health status (e.g. the prevalence of specific health problems such as lung cancer), (iii) Determinants of health (e.g. the proportion of people who drink in excess of the recommended alcohol levels), and (iv) Health systems (e.g. the number of acute hospital beds).

While the classification system used by the ECHI team is useful to POMONA in categorising potential health indictors for people with intellectual disability, the ECHI indicators themselves may not be appropriate for people with intellectual disability. Why? Because there is now a considerable body of evidence indicating disparities in health status and use of health services between people with intellectual disability and their non-disabled peers. In comparison with the general population, for example, individuals with intellectual disability are less likely to receive vaccinations (Schor et al. 1981), have an increased probability of being obese (Bell and Bhate 1992), and are significantly more likely to have a congenital heart defect (Martin 1997). In addition, despite the fact that individuals with intellectual disability have an increased prevalence of certain health conditions (e.g. thyroid disease or diabetes), these conditions are poorly addressed by primary care providers (Jones and Kerr 1997). The evidence to date suggests that the health indicators identified by ECHI on behalf of the general population may not always be the most sensitive health indicators for people with intellectual disability.

The consultation process

Throughout the project, a consultation process is being conducted in each member state with a variety of interested parties, such as individuals who have intellectual disabilities, family members, advocates, health professionals and policy makers. The primary aim of this consultation process is to generate appropriate health indicators for people with intellectual disability and to provide, where possible, suggestions to the valid measurement of these indicators in each member state. Throughout the summer POMONA partners began this consultation process in their own member state. Common issues identified by partners included the impact of residential and social supports on health, the inclusion of people with intellectual disability in health promotional activities, and the availability of specialised training for health care professionals working in this field.

An all-partner meeting in Jerez, Spain, in late September 2003 provided a forum for partners to discuss candidate indicators. A draft shortlist of indicators is now being generated on the basis of these discussions. This shortlist will be refined in the coming months. In the meantime, partners will be gathering evidenced-based material from each member state in support of their candidate health indicators. A final all-partner meeting is scheduled for April 2004, when the final list of indicators will be agreed.

How does POMONA benefit people with intellectual disability?

By developing health indicators specifically for people with intellectual disability, POMONA aims to advance the future understanding of health of people with intellectual disabilities across the European Union. In addition, it is hoped that these health indicators will facilitate the planning, monitoring and evaluation of health programmes throughout the Community.

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