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]