pomona health indicators for people with id in the eu professor m. kerr welsh centre for learning...
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POMONA Health indicators for people with ID in the EU
Professor M. Kerr
Welsh Centre for Learning Disabilities, School of Medicine, Cardiff University, Cardiff, UK
With thanks to Dr Christine Linehan & Dr Jon Perry
Structure
What is health? Disparity The POMONA Project Utility Conclusion
Defining Health
Defining Health
“a state of complete physical, mental, and social well-being and not merely the absence of disease, or
infirmity”
Preamble to World Health Organisation Constitution defines health as:
International Covenant on Economics, Social & Cultural Rights (ICESCR)
Article 12: The Right to Health
“The right to health is important in itself for people with disabilities. But it also serves a more instrumental function in helping to prime people with disabilities for a life of active participation in
the mainstream”
CONVENTION on the RIGHTS of PERSONS with DISABILITIES
(Article 25)
“persons with disabilities have the right to the enjoyment of the highest attainable standard of health…
….the same range, quality and standard of free or affordable health services as provided other persons…
….receive those health services needed because of their disabilities
….and not to be discriminated against in the provision of health insurance”
Health Disparity
Disparities in health have a moral and ethical dimension
Defining Health Disparities
So, in order to describe a certain situation as inequitable, the cause has to be examined and judged to be unfair in the context of what is going on in the rest of society.” (Whitehead, 1992, p.5)
Refer to differences which are unnecessary and avoidable but, in addition, are also considered unfair and unjust as they are systematically associated with disadvantaged groups
What is a Health Disparity? Evidence of a difference in
health through:
• Increased mortality
• Increased morbidity
• Increases in negative determinants of health, such as poverty
• Evidence of a difference in healthcare
• Access to services
• Quality of services(Scheepers et al, 2005)
Evidence ofHealth Disparities
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
In 2002, POMONA received funding from the European Commission to examine the issue of systematic health monitoring for Europeans with Intellectual Disabilities
A standardised health protocol has been developed and translated into 13 languages
Piloting of the health protocol is now underway on samples of approximately 100 adults with intellectual disabilities in 14 European countries
Structure Method Sample Support needs Type of residence Epilepsy
BMI Mental Health Challenging
Behaviour Prescribed
medication Health Promotion
Method
POMONA 1.Establish health indicators 2002-2004
13 EU countries
Iterative evidence led Delphi process
POMONA 2. 2005-2008 assess feasibility of gathering indicators
14 EU countries
Non epidemiological convenience sampling
Sample DistributionDistribution of sample across participating member states
Frequency Percent
Austria 80 6.3
Belgium 80 6.3
Finland 263 20.7
France 80 6.3
Germany 80 6.3
Ireland 70 5.5
Italy 80 6.3
Lithuania 52 4.1
The netherlands 72 5.7
Norway 63 5.0
Romania 80 6.3
Slovenia 84 6.6
Spain 115 9.1
United kingdom 70 5.5
Total 1269 100.0
Support Needs Scale Overall, 49% of participants were female and 51% were male.
The mean age was 41 years (range 19 to 90). Scores on the Support Needs Scale (SNS) averaged 46.5% across the whole sample (range, 0-100, SD 30.2). There was representation of the full range of scores across the scale with the dispersal of scores across being fairly consistent. Approximately one third of the sample had SNS scores in the lower quartile of the range, one fifth had scores in the upper quartile and just under a half (46%) had scores in the range between 30% and 75%. Apart from country 12 where the mean SNS score was 24%, Mean SNS scores for the other countries were reasonably consistent and fell between the range of 38% to 60%.
Place of residence of group Frequency %
Independent or semi-independent 146 11.7
Family home 437 34.9
Residential setting for 16 or more
people 219 17.5
Residential setting for fewer than 16
people 373 29.8
Nursing home for the elderly,
psychiatric hospital or other type of
setting
78 6.2
Total 1253 100.0
Place of residence by country
0
10
20
3040
50
60
70
80
%
1 2 3 4 5 6 7 8 9 10 11 12 13 14
Country
Independent/Semi-independent Family Home
Residential home for 16 or fewer Residential home for 16 or more
Nursing home/ Hospital/ Other
Active epilepsy by country
0
10
20
30
40
50
60
%
1 2 3 4 5 6 7 8 9 10 11 12 13 14
Country
BMI Distribution
% Males % Females % Overall
Underweight 16.2 15.1 15.7
Normal 34.8 33.0 33.9
Overweight 30.0 26.3 28.2
Obese 19.0 25.5 22.3
BMI Distribution by country
05
101520253035404550
%
1 2 3 4 5 6 7 8 9 10 11 12 13 14
Country
Underweight Normal weight Overweight Obese
Mental health According to scores on the Psychiatric Assessment
Schedule for Adults with a Developmental Disability (PASADD) 12.5% of people reached caseness for a possible psychiatric disorder at the time when the checklist was administered. Specifically, the proportions reaching caseness for possible organic, affective/neurotic or psychotic disorders were 3.8%, 6.8% and 7.2% respectively.
Proportion reaching psychiatriccaseness by country
0
5
10
15
20
25
30
%
1 2 3 4 5 6 7 8 9 10 11 12 13 14
Country
Challenging behaviour The mean total score on the Aberrant Behavior
Checklist (ABC) was 12.9 (range, 0 to 154, SD 18.0). The proportion of the sample scoring higher than the 80th percentile on the irritability, lethargy, stereotypy, hyperactivity and inappropriate speech subscales of the ABC were 4.7, 5.2, 5.6, 4.4 and 10.8 respectively. The proportion of people scoring above the 80th percentile on any of the subscales was 18.7%.
Mean total score on the Aberrant Behavior Checklist, by country
0
5
10
15
20
25
1 2 3 4 5 6 7 8 9 10 11 12 13 14
Country
Proportion of the sample with one or more severe or frequent challenging behaviour recorded on the Aberrant Behavior Checklist, by country
0
5
10
15
20
25
30
35
40
45
%
1 2 3 4 5 6 7 8 9 10 11 12 13 14
Country
Prescribed drug use amongst the full sample by ATC category
0
10
20
30
40
50
60
%
ATC category
Alimentary tract & metabolism Blood & blood forming agents
Cardiovascular system Dermatologicals
Genito urinary system Systemic hormonal preparations
Antiinfectives Antineoplastic & immunomodulating agents
Musculo-skeletal system Nervous system
Antipsychotic, Antiepileptic and Antidepressant Usage
0
5
10
15
20
25
30
%
ATC category
Antipsychotics Antiepileptics Antidepressants
Antipsychotic, antiepileptic and antidepressant medication use by country
0
10
20
30
40
50
60
%
1 2 3 4 5 6 7 8 9 10 11 12 13 14
Country
Antipsychotic Antiepileptic Antidepressant
Summary of main health indicatorsDEMOGRAPHICS
Living arrangements Daily Occupation Income
Residential service
53% Employed 54% Euros per week (median)
20
Families 35% Paid employment 29%
Partial or no support
12% Hours per week (mean)
23.5
HEALTH STATUS
Epilepsy Oral health BMI Mental health Sensory Mobility
Diagnosis 28%
Mouth pain 21% Underweight
15.7% Organic disorder 3.8% Difficulty seeing small print
27% Difficulty with mobility
26%
Seizure last 5 years
20%
Visits to dentist (mean frequency/year)
1.45 Normal 33.9% Affective/neurotic disorder
6.8% Difficulty seeing >4meters
43%
Epilepsy related A&E visit
4% Easy access to dentist
88% Overweight
28.2% Psychotic disorder 7.2% Difficulty hearing
15%
Obese 22.3%
Summary of indicators 2HEALTH DETERMINANTS
Physical activity Challenging behaviour Medication use
Sedentary 52% ABC score (mean) 12.9 Use of at least one type of medication
65%
Light exercise 42% Severe or frequent CB
19% Use of ‘nervous system related’ medication (amongst those who used any type of medication)
52%
Heavy exercise 6%
HEALTH SYSTEMS
Health promotion Hospitalisation Contact with health professional in last year
Health check (last year) 64% Cholesterol (5 years)
60% Inpatient (last year) 17% GP 83%
Influenza vaccination(10 years)
57% Breast examination (1 year)
36% A&E (last year) 15% Mental health professional
37%
Tetanus vaccination (10 years)
54% Mammogram (over 50, last 2 years)
45% Physiotherapist 21%
Hepatitis B vaccination (10 years)
32% Cervical screen (3 years)
30% Speech therapist 21%
Blood pressure (5 years) 89% Testicular cancer screen
9% O.T. 14%
Key issues
Non epidemiological sample Shows great variation by country This variation needs further investigation
Utility
Conclusion
The public health field will not address issues for PWLD without direct support
This study has given a proof of concept that addressing the health needs of people with an ID is possible and acceptable-and that the health measures look worthy of change
Prof Patricia Noonan Walsh (IE) & Christine Linehan (Project Manager)
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, Dr Jon Perry (UK)
POMONA I & II PARTNERSPOMONA I & II PARTNERS
www.pomonaproject.org