Transcript Document
The Development of a European Set of Health Indicators for People with Intellectual Disability Linehan, C., Walsh, P.N., Kerr, M & Van Schrojenstein Lantman-de Valk 13th European Conference on Public Health Promoting the Public’s Health Graz, Austria 10-12 November 2005 UCD Centre for Disability Ionad an Staidéir Mhichumais Studies UCD This Presentation • What is Intellectual Disability? • What is Health Status & Access to Health Care like for people with Intellectual Disability? • What Health Monitoring is undertaken? • What is the POMONA Project? • What future work is needed? Defining Intellectual Disability • Intellectual Disability, Learning Disability, Mental Retardation A disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18 • Prevalence Difficult to establish – WHO (2001) estimates suggest approximately 5 million people with Intellectual Disability reside in EU. Disparity: Health Status Special Olympics (Horwitz et al., 2000) Higher rates of obesity Lower levels of cardiovascular fitness Lower levels of vaccination Higher level of mental health disorders Poorer oral health Poorer access to health screening Disparity: Access to Health Care • Less likely to receive adequate health care despite the increased health problems • Perception remains of the need for ‘specialist health care’ • Generic health care services ‘uncomfortable’ or ‘inexperienced’ in providing care • Barriers to health care include discrimination, stigmatisation & stereotypical beliefs about people with intellectual disability Addressing the Disparity (US) Closing the Gap (2002) States: “People with disabilities: (i) experience poorer health status (ii) are more susceptible to ill health (iii) have limited access to treatment (iv) may be excluded from health promotion opportunities” Gloria Krahn (p. A-10) Health Monitoring (US) • US Surgeon General, (2002, p.5) states: “The lack of population based data on prevalence of (Intellectual Disability) and the health status and service needs of this population impedes planning and allocating resources for their care” • National Core Indicator Project Established since 1996 – now includes 24 states Broader than health indicators – social etc. Survey sample method Each state, N=400 service users >18 years Health Monitoring (EU) • Article 152 of the Amsterdam Treaty obliges the EU to ensure health protection in implementing all Community policies and activities • Programme of Community Action in the Field of Public Health (2003-2008) - Improving health information and knowledge - Responding rapidly to health threats - Addressing health determinants EU Development of Health Indicators • ECHI European Community Health Indicators (Kramers) (www.europa.eu.int/comm/health) January 2005 – shortlist 82 Items, 46 available • Demographics • Health Status • Health Determinants • Health Interventions: services & promotion • Until now People with Intellectual Disability largely excluded • Funded by DG Health and Consumer Protection, European Commission • Health Indicators for People with Intellectual Disabilities (2002-2004) – Developing an Indicator Set • Health Indicators for People with Intellectual Disabilities (2005-2008) – Applying an Indicator Set Why develop health indicators for persons with intellectual disabilities? • There is considerable evidence about health disparities between people with intellectual disabilities and the general population • In the enlarged EU (since May 2004), there are an estimated 5 million persons with intellectual disabilities • The ECHI report (2001) did not include evidence about the healthy ageing of persons with intellectual disabilities – and they are excluded from the ECHI 2 shortlist • Monitoring systems in the Member States do not typically document the health of citizens with intellectual disabilities Generic EU Health Data Sources • HIS/HES Review of the European Health Interview & Health Examination Surveys Database (N=54 omnibus surveys) – no systematic inclusion • HIPE In the ‘Hospital In-patient Enquiry System’, intellectual disability is coded but compliance with completing the data reports is an issue Public health and people with ID in Europe • Attempts to monitor health of people with ID are hampered by a lack of available data – Prevalence not yet determined – United Nations – National registers are rare – Ireland – Census type data are not available as a denominator – For the moment – we rely on sample surveys Pomona 2002-2004 • Partners from 13 EU countries worked together to develop an evidence-based set of 18 health indicators. • Review of literature on evidence relating to healthy of persons with intellectual disabilities • Summary evidence from each Member State about systems in place to monitor the health of the general population and also those with intellectual disabilities • Consultation with advocates – family membersexperts in each Member State • Collaborative meetings to appraise the initial list of indicators and to agree on the final list of 18 indicators Selecting European Community Health Indicators • Scientific principles to guide process • Indicators should meet methodological, quality criteria • Flexible - meet changing policy interests • Base selection on existing and comparable datasets – ECHI Report 2001 (available on SANCO website) Pomona: Final set of 18 indicators • Determinants • Demographic • Prevalence • Physical activity • Living • Challenging behaviour arrangements • Psychotropic • Daily Occupation medication use • Income/status • Life Expectancy • Health Systems • Health Status • Hospitalisation, • Epilepsy contact with health • Oral health care professionals • BMI • Health check • Mental Health • Health promotion • Sensory • Specific training for • Mobility physicians Partners in Pomona-2 (2005-2008) Christine Linehan – Ireland (Project Manager) Germain Weber - Austria Arunas Germanavicius - Lithuania Geert van Hove - Belgium Jan Tøssebro - Norway Tuomo Maatta - Finland Alexandra Carmen Cara - Romania Bernard Azema - France Dasa Moravec Berger-Slovenia Meindert Haveman - Germany Luis Salvador Carulla - Spain PN Walsh - Ireland MP Kerr – Wales, UK Serafino Buono - Italy HMJ van Schrojenstein Lantman-de Valk – the Netherlands Pomona-2 Workplan (2005-2008) – Operationalize the set of 18 health indicators – Gather data on samples of people in 14 Member States – Consult Member State, EU and WHO levels – Share findings publications, conference presentations etc – Inform policy in each Member State and also through the EU Public Health structures Some challenges • Develop reliable, valid measures of the health indicators • Respect local and regional ethical procedures • Translate the measures and apply in 14 countries with very varied health systems and traditions of support for people with intellectual disabilities • Consult effectively with people who have disabilities, family members, health professionals, policy makers Further Information • www.pomonaproject.org • Christine Linehan Senior Researcher Centre for Disability Studies, B207 UCD Geary Institute University College Dublin, Belfield, Dublin 4 Ireland Email: [email protected]