Transcript Monitoring the Health of People with Intellectual

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
UCD Centre for Disability Studies
Ionad an Staidéir Mhichumais UCD
UCD School of Psychology
Scoil na Síceolaíochta UCD
IASSID Roundtable on Physical
Health 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 Presentation
• Brief review of disparities – what we know
• Addressing disparities through data – USA
and UN initiatives
• IASSID position statement
• Surveying the surveys
• European initiatives
• Possible mechanism for the inclusion of
people with ID in initiatives
• Future steps
Evidence of Health Disparities
Evidence of Health Disparities
Increased Mortality:
Lower life expectancy
Increased Morbidity:
Epilepsy, sensory impairment,
behavioural disorder
Increase in negative
determinants
of health:
Obesity & underweight, low
employment, fewer social
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 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
• Environments that support inactivity, poor nutrition
• Individual behaviours based on poor
knowledge of healthy lifestyles
• In adequate health care access that
contributes to poor management of
conditions such as epilepsy
Krahn et al, 2006
Addressing Health Disparities
Healthy People 2010 is a set of health objectives for the
US to achieve over the first decade of the new century.
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.
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”
Attempts to measure health & disability:
United 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 crossnationally 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
health & disability:
United 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
public 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
Disparity (Scheepers et al., 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 Surveys
Are people with Intellectual Disability included in
health surveys?
Sampling frame – The European Health Interview
Surveys & Health Examination Surveys Database
(https://www.iph.fgov.be/hishes/)
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
Number of Health Interview/Examination Surveys
examined in 14 European Countries (N=123)
UK
SWEDEN
SPAIN
SLOVENIA
ROMANIA
NORWAY
NETHERLANDS
LUXEMBOURG
European Countries
LITHUANIA
ITALY
IRELAND
GERMANY
FRANCE
FINLAND
DENMARK
BELGIUM
AUSTRIA
0
AUSTRIA
European Countries
4
5
BELGIUM DENMARK FINLAND
4
2
17
10
FRANCE GERMANY IRELAND
15
6
10
15
ITALY
LITHUANIA
6
4
20
25
LUXEMBO NETHERLA
NORWAY ROMANIA SLOVENIA
URG
NDS
8
European Countries
5
4
1
2
30
SPAIN
SWEDEN
UK
5
4
26
Profile HIS HES Surveys (N=123)
https://www.iph.fgov.be/hishes/
• Surveys conducted between 1986 – 2005 (60%: 2000-2003)
• Scope (available on N=101) – ranging N=1,000 for Eurobarometers in Luxembourg to N=10,296,350 for Belgium
General Socio- Economic Survey 2001 (census)
Profile HIS HES Surveys (N=123)
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
HEALTH STATUS
(1%) Prevalence
(14%) Epilepsy
(9%) Living Arrangements
(34%) Oral Health
(0%) Life Expectancy
(62%) Body Mass Index
(50%) Daily Occupation
(51%) Mental Health
(36%) Income/SES status
(42%) Sensory
(39%) Mobility
DETERMINANTS OF HEALTH
HEALTH SYSTEMS
(58%) Health Check
(45%) Physical Activity
(18%) Health Promotion
(0%)
(0%) Specific training for
Physicians in Intellectual Disability
Challenging Behaviour
(52%) (Psychotropic) Medication
(63%) Hospitalisation & Contact
with Health Care Professionals
HIS HES by possibility of extracting health data
on behalf of participants with Intellectual Disability
UK
SWEDEN
SPAIN
SLOVENIA
European Countries
ROMANIA
NORWAY
NETHERLANDS
LUXEMBOURG
LITHUANIA
ITALY
IRELAND
GERMANY
FRANCE
FINLAND
DENMARK
BELGIUM
AUSTRIA
0
5
10
AUSTRIA BELGIUM DENMARK FINLAND
FRANCE
15
GERMAN
IRELAND
Y
ITALY
20
25
LITHUANI LUXEMBO NETHERL
SLOVENI
NORWAY ROMANIA
A
URG
ANDS
A
30
SPAIN
SWEDEN
UK
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
Not possible
Possible but small N
Possible
Need for Systematic Health Monitoring
• 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
• How might this happen?
Europe’s Response to
Narrow the Health Gap
Acknowledging health
disparity across Europe
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.
The 2003-2008 Budget for this
programme is €350 million
Proposed 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.
It will also require, as a key underpinning element, the
continuing development of accurate, comparable and up
to date health information.
European Health Survey System
(EHSS)
Will people with Intellectual Disabilities be
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
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
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?
• 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:
There 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
POMONA I & II PARTNERS
Prof Patricia Noonan Walsh &
Christine Linehan (Project
Manager) (IE)
Prof Germain Weber (AT)
Prof Geert van Hove (BE)
Dr. Arunas Germanavicius
(LT)
Dr. Raymond Ceccotto (LU)
Dr. Jan Tøssebro (NO)
Prof Meindert Haveman (DE)
Dr Henny van Schrojenstein
Lantman-de Valk (NL)
Mr Frank Ulmer Jørgensen (DK)
Dr. Luis Salvador (ES)
Dr. Tuomo Määttä (FI)
Dr. Alexandra Carmen Cara
(RO)
Prof Charles Aussilloux & Dr
Bernard Azema (FR)
Dr. Serafino Buono (IT)
Dr. Monica Björkman (SE)
Dr. Dasa Moravec Berger
(SI)
Prof Mike Kerr (UK)
www.pomonaproject.org
ACKNOWLEDGEMENT
Ms Frances Dawson, Researcher, UCD Centre for
Disability Studies
Thank you!