ionad an staidéir mhichumais ucd scoil na síceolaíochta ucd ucd centre for disability studies ucd...
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Ionad an Staidéir Mhichumais UCD
Scoil na Síceolaíochta UCD
UCD Centre for Disability Studies
UCD School of Psychology
Monitoring the Health of People with Intellectual Disabilities within European
Health Surveys
Ms Christine Linehan
Prof Patricia Noonan Walsh
Dr Henny van Schrojenstein Lantman-de Valk
Prof Mike Kerr
on behalf of the POMONA Project
IASSID Roundtable on Physical IASSID Roundtable on Physical Health Special Interest GroupHealth Special Interest Group
“Chronic Disease Management in People with Developmental Disability”
Monash University, Prato, Italy
20-23 May 2007
Organised by
Centre for Developmental Disability Health, Victoria, Monash University, Australia
Outline of PresentationOutline of Presentation
• Brief review of disparities – what we knowBrief review of disparities – what we know
• Addressing disparities through data – USA Addressing disparities through data – USA and UN initiativesand UN initiatives
• IASSID position statementIASSID position statement
• Surveying the surveysSurveying the surveys
• European initiatives European initiatives
• Possible mechanism for the inclusion of Possible mechanism for the inclusion of people with ID in initiativespeople with ID in initiatives
• Future stepsFuture steps
Evidence of Health DisparitiesEvidence of Health Disparities
Evidence of Health DisparitiesEvidence of Health Disparities Increased Mortality: Lower life expectancy
Increased Morbidity: Epilepsy, sensory impairment, behavioural disorder
Increase in negative Obesity & underweight, low determinants employment, fewer social of health: connections & meaningful
relationships
Access to services: Low rates of uptake of health promotion
Quality of services: High rates of prescribed antipsychotic medication with no evidence of psychosis; high rates of unrecognised disease
Kerr, 2004
Factors Contributing to Health DisparitiesFactors Contributing to Health Disparities• Genetic factors such as thyroid problems associated
with Down’s Syndrome
• Social circumstances characterised by low income, social isolation, vulnerability
• Environments such as those that are physically inaccessible
• Individual behaviours based on poor knowledge of healthy lifestyles
• Environments that support inactivity, poor nutrition
• In adequate health care access that contributes to poor management of conditions such as epilepsy
Krahn et al, 2006
Addressing Health DisparitiesAddressing Health Disparities
Objective 6-1: Include in the core of all relevant Healthy People 2010 surveillance instruments a standardized set of questions that identify "people with disabilities”
Aim: Promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S. population.
Healthy People 2010 is a set of health objectives for the US to achieve over the first decade of the new century.
Attempts to measure health & disability:Attempts to measure health & disability:United Nations Washington GroupUnited Nations Washington Group
The Washington Group has developed a short question set for use on censuses and national surveys for gathering information about limitations in basic activities in national populations.
The questions were designed to provide comparable data cross-nationally for populations regardless of culture or economic resources. The objective is to identify persons with similar types and levels of limitations in basic activities regardless of nationality or culture.
International approaches to measuring International approaches to measuring health & disability:health & disability:
United Nations Washington GroupUnited Nations Washington Group
Do you have difficulty seeing, even if wearing glasses? Do you have difficulty hearing, even if using a hearing aid? Do you have difficulty walking or climbing steps? Do you have difficulty remembering or concentrating?
Additional Questions:Do you have difficulty (with self-care such as) washing all over or dressing?Because of a physical, mental of emotional health condition, do you have difficulty communicating, (for example understanding others or others understanding you)?
Invisibility of people with ID in Invisibility of people with ID in public health monitoring systemspublic health monitoring systems
“Persons with ID should not be subsumed into a broad “disability population” definition, because additional factors, which may affect health outcomes, play significant roles that require specific attention to the needs of people with a range of syndromes, but having in common cognitive difficulties”. (p.250)
(Scheepers et al, 2005, p.250)
IASSID Position Statements on Health IASSID Position Statements on Health Disparity (Scheepers Disparity (Scheepers et al.,et al., 2005) 2005)
“Surveys and data systems should identify persons with ID, as recognition can then be used to facilitate measurement of
all aspects of health and reduce health disparities.”
“The prima facia evidence is that to date persons with ID are all but invisible within population surveys of larger disability samples” (p.250)
Surveying the SurveysSurveying the Surveys
Are people with Intellectual Disability included in health surveys?
Aromaa, A, Koponen, P , Tafforeau, J, Vermeire, C and The HIS/HES Core Group (2003) Evaluation of Health Interview Surveys and Health Examination Surveys in the European Union. The European Journal of Public Health 2003 13(Supplement 1):67-72
Sampling frame – The European Health Interview Surveys & Health Examination Surveys Database
(https://www.iph.fgov.be/hishes/)
0 5 10 15 20 25 30
AUSTRIA
BELGIUM
DENMARK
FINLAND
FRANCE
GERMANY
IRELAND
ITALY
LITHUANIA
LUXEMBOURG
NETHERLANDS
NORWAY
ROMANIA
SLOVENIA
SPAIN
SWEDEN
UK
European Countries
Number of Health Interview/Examination Surveys examined in 14 European Countries (N=123)
European Countries
European Countries 4 4 2 17 15 6 10 6 4 8 5 4 1 2 5 4 26
AUSTRIA BELGIUM DENMARK FINLAND FRANCE GERMANY IRELAND ITALY LITHUANIALUXEMBO
URGNETHERLA
NDSNORWAY ROMANIA SLOVENIA SPAIN SWEDEN UK
Profile HIS HES Surveys (N=123) Profile HIS HES Surveys (N=123) https://www.iph.fgov.be/hishes/https://www.iph.fgov.be/hishes/
• Surveys conducted between 1986 – 2005 (60%: 2000-2003)
• Scope (available on N=101) – ranging N=1,000 for Euro-barometers in Luxembourg to N=10,296,350 for Belgium General Socio- Economic Survey 2001 (census)
Profile HIS HES Surveys (N=123) Profile HIS HES Surveys (N=123) https://www.iph.fgov.be/hishes/https://www.iph.fgov.be/hishes/
• Inclusion of population from ‘institution for people with mental handicap’ (available N=96)
– 19% YES– 81% NO
• Use of Proxy (for children, adults not in home, adults not able to reply, institutionalised groups; available N=77)
– 75% YES– 25% NO
DEMOGRAPHICS
(1%) Prevalence
(9%) Living Arrangements
(0%) Life Expectancy
(50%) Daily Occupation
(36%) Income/SES status
HEALTH STATUS
(14%) Epilepsy
(34%) Oral Health
(62%) Body Mass Index
(51%) Mental Health
(42%) Sensory
(39%) Mobility
DETERMINANTS OF HEALTH
(45%) Physical Activity
(0%) Challenging Behaviour
(52%) (Psychotropic) Medication
HEALTH SYSTEMS
(58%) Health Check
(18%) Health Promotion
(0%) Specific training for Physicians in Intellectual Disability
(63%) Hospitalisation & Contact with Health Care Professionals
HIS HES by possibility of extracting health data on behalf of participants with Intellectual Disability
0 5 10 15 20 25 30
AUSTRIA
BELGIUM
DENMARK
FINLAND
FRANCE
GERMANY
IRELAND
ITALY
LITHUANIA
LUXEMBOURG
NETHERLANDS
NORWAY
ROMANIA
SLOVENIA
SPAIN
SWEDEN
UK
Eu
rop
ean
Co
un
trie
s
Not possible Possible but small N Possible
Possible 0 0 0 0 2 0 0 0 1 0 0 0 0 0 1 0 0
Possible but small N 0 0 2 2 0 0 0 0 0 0 3 2 0 0 0 0 19
Not possible 3 4 0 15 7 3 9 0 2 5 1 0 0 0 3 4 5
AUSTRIA BELGIUM DENMARK FINLAND FRANCEGERMAN
YIRELAND ITALY
LITHUANIA
LUXEMBOURG
NETHERLANDS
NORWAY ROMANIASLOVENI
ASPAIN SWEDEN UK
Need for Systematic Health MonitoringNeed for Systematic Health Monitoring
• How might this happen?
• Recognition of the need to monitor the health of people with disabilities through census/national surveys
• Recognition of the need to include people with ID in these health monitoring activities
Europe’s Response to Europe’s Response to Narrow the Health GapNarrow the Health Gap
Community Action on Health Monitoring Programme aims to produce a health monitoring system to monitor the health status in the community, facilitate the planning, monitoring and evaluation of Community programmes and to provide Member States with information to make comparisons and to support their national policies.
Acknowledging health disparity across Europe
The 2003-2008 Budget for this programme is €350 million
Proposed European Health StrategyProposed European Health Strategy
The European Commission is currently developing a new Health Strategy which it aims to adopt in summer 2007.
A core issue of the Health Strategy is to help reduce health inequalities, narrowing health gaps within and between countries.
European Health Survey System (EHSS)
It will also require, as a key underpinning element, the continuing development of accurate, comparable and up to date health information.
Will people with Intellectual Disabilities be Will people with Intellectual Disabilities be included in the European Health System?included in the European Health System?
Minimum European Health Module (MEHM)
CONDUCTED ANNUALLY IN EUROPE
Restricted to 3 variables:
• How is your health in general?
• Do you suffer from (have) any (long standing) illness or condition (health problem)?
• For the past 6 months or more have you been limited in activities people usually do because of a health problem?
Will people with Intellectual Disabilities be Will people with Intellectual Disabilities be included in the European Health System?included in the European Health System?
European Health Interview Survey (EHIS)
CONDUCTED EVERY 5 YEARS IN EUROPE
Comprises 4 components:
• EHSM (Health Status includes MEHM)
• EHDM (Health Determinants)
• EHCM (Health Care)
• EBM (Background Variables)
Will people with Intellectual Disabilities be Will people with Intellectual Disabilities be included in the European Health System?included in the European Health System?
European Special Health Interview Surveys
CONDUCTED WHEN APPROPRIATE
• This component comes under the Community Public Health Programme – which funds POMONA Health Indicators for People with Intellectual Disabilities
• According to the Europa website these modules will focus on ICF and mental health issues
• Is this the route to systematic health monitoring for people with Intellectual Disabilities?
Future Developments?Future Developments?
• POMONA Partnership can open negotiations with the European Health Survey System given its representation on the European Commission Working Group of Morbidity and Mortality Working Party (MMWP) and the Task Force on Major and Chronic Diseases (TFMCD)
A final thought: A final thought: There is Strength in NumbersThere is Strength in Numbers
• Health information systems have been shown to deliver cost savings and improve health outcomes.
• Information has also been used to hold politicians accountable for health indicators and to advocate for increases in overall resources for health.
Stansfield, S (2005) Bulletin of the World Health Organisation
Prof Patricia Noonan Walsh & Christine Linehan (Project Manager) (IE)
Prof Germain Weber (AT)
Prof Geert van Hove (BE)
Prof Meindert Haveman (DE)
Mr Frank Ulmer Jørgensen (DK)
Dr. Tuomo Määttä (FI)
Prof Charles Aussilloux & Dr Bernard Azema (FR)
Dr. Serafino Buono (IT)
Dr. Arunas Germanavicius (LT)
Dr. Raymond Ceccotto (LU)
Dr. Jan Tøssebro (NO)
Dr Henny van Schrojenstein Lantman-de Valk (NL)
Dr. Luis Salvador (ES)
Dr. Alexandra Carmen Cara (RO)
Dr. Monica Björkman (SE)
Dr. Dasa Moravec Berger (SI)
Prof Mike Kerr (UK)
POMONA I & II PARTNERSPOMONA I & II PARTNERS
www.pomonaproject.org
ACKNOWLEDGEMENTACKNOWLEDGEMENT
Ms Frances Dawson, Researcher, UCD Centre for Disability Studies
Thank you!Thank you!