Functioning and Disability in Ageing Population in Europe: What Policy for which Interventions?

4. Measuring Health and Disability in Ageing in Europe: The ICF Framework and its Importance for Ageing Policy in Europe

The occurrence of a disorder is not an accurate predictor of receipt of disability benefits, work performance, return to work, likelihood of social integration. Diagnosis alone does not predict service needs, length of hospitalisation, level of care or functional outcomes. This means that if we use a medical classification of diagnosis alone, e.g. the ICD (International Classification of Diseases), we will not have the information we need for health planning and management purposes.
Up to date international comparable data about functioning and disability is simply not available. The primary reason for this is that different countries, for different purposes, define disability differently. As a European Commission study on definition of disability in Europe has shown (the Brunel University Report 2003), data on disability is not consistently gathered because some countries, for example, define disability in terms of performance levels in employment or other social activities. In the employment sector specifically, for example, coordinated policy across Europe has been undermined by the inability to collect comparable data about rates of disability and employment.
The World Health Organisation has for several years been aware of this widespread problem of data comparability both in health and disability statistics. Following its mandate for producing standards for international data comparability in the health area, the WHO began in 1974 to supplement its international classification of diseases, ICD, International Statistical Classification of Diseases and Related Health Problems (WHO 1992-94) with a companion classification of functioning and disability, ICIDH, International Classification of Impairments, Disability and Handicap (WHO 1980). This Classification underwent a revision process that lasted several years. After extensive international field testing the final version of the International Classification of Functioning Disability and Health, ICF, has been endorsed by the World Health Assembly in May 2001 (WHO 2001). ICF has been accepted by 191 countries as the international standard to describe and measure health and disability, both as a model for structuring health and disability information, and as a classification and coding tool for collecting this information. The ICD-10 and the ICF are the two classifications that currently make up the WHO Family of International Classifications/WHO-FIC.
Disability is a multi-dimensional phenomenon arising out of an interaction between the individual’s health status and the physical and social environment (Leonardi, et al., 2006). Disability data, and the instruments to measure them, must reflect this bio-psychosocial model of disability. Valid and reliable information are essential to design, implement or evaluate policies and legislation to combat discrimination and promote social integration, participation and enhance opportunities.
The underlying theory of the ICF is based on two important principles that directly affect measurement strategies:
• the principle that disability is a common, indeed universal feature of the human condition, rather than the mark of a social minority group (universalism);
• functioning and disability, both at the population and individual levels, are continuous phenomena, matters of ‘more or less’ rather than strict dichotomous categories.
Taken together, these principles entail that the measurement of disability must arise from a determination of the range of functioning across all domains, rather than a priori from either self-identification or by allocation into categories merely by the presence of certain bodily impairments such as blindness, deafness, mental retardation or paralysis.
Following the principle of universalism, and viewing disability on a continuum of health and functioning for all people, it is necessary to collect information having a comprehensive description of disability, an evidence-based definition of domains of disability and a baseline reference population for comparisons. In this way, inequalities can be described and measured by the difference between opportunities for participation that persons with and without impairments experience. These inequalities define unmet needs associated with impairments, including those created by discriminatory policies and practices. In the ICF Environmental Factors classification, discriminatory behaviours and attitudes are included, making it possible, for the first time, to include questions regarding environmental barriers and facilitators in surveys and other information-gathering instruments, questions which use a common framework that will then make data comparisons more feasible and practical. These data can then be compared across countries, populations, and age groups. In addition, the effects on an individual’s level of participation of these behaviours and attitudes can be measured, and interventions designed

5. Measuring Disability in Europe: The Experience from EU MHADIE Projects

in 2005 the European Commission, DG Health, within the context of 6FP’s Scientific Support to Policies projects, funded a three-years research program called MHADIE (Measuring Health and Disability in Europe: supporting policy development). MHADIE’s ( conceptual and operational background is WHO’s International Classification of Functioning Disability and Health. The project’s objectives are: a) to use ICF’s model to analyse population studies data and orientate future studies and b) to show that it’s adequate to describe disability cross-nationally and in different clinical settings; c) to prove that ICF is useful in clinical, rehabilitation and education sectors; d) to produce policy recommendations and guidelines to harmonize EU data into ICF’s model.
The MHADIE project main areas’ results are in Statistics, a research area in which a software to map existing surveys’ databases items to ICF model has been developed, to point which areas are not covered in health and disability surveys in Europe. Clinical data collection: based upon 1119 European citizens from five countries, MHADIE researchers have used a protocol composed by ICF-based tools (the ICF checklist and the WHO-DAS II), together with several other tools (clinical and of QoL). They provided comparative data on functioning and offered real information on the impact of health conditions, beyond diagnosis, and on functioning in areas such as employment. Data on education and disability were analysed, ICF-CY (Children & Youth version) was used and tested and MAP-EP (Matrix of Analysis of Problems in Education Planning), a protocol to match clinical conditions and educational needs, was developed.
MHADIE’s results confirm that data collected in national and international studies suffer conceptual confusion, incoherencies and ambiguities on disability definition and on the relationships between health conditions, impairments and environmental factors. The projects rises in fact from a context in which different countries define and measure disability in different ways. ICF has proven to be a useful instrument for, among other uses, policy planning. MHADIE results are being presented to the EU Commission and provide a definition of disability domains and a base to compare populations’ health and disability that are suitable for increasing the EU capacity of analysis.

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