Transcript Consequences of deinstitutionalisation (2)

Surveying the Health of People with
Intellectual Disabilities
Round Table Aim:
“ … to develop a framework for the management of
chronic disease in people with intellectual disability.”
Theme – Day 1:
“ The current evidence base on chronic disease in
people with intellectual disability”.
What do we know about the health of people
with intellectual disabilities?
“abundant evidence that people with intellectual
disabilities are more likely to live in poor health
and die earlier than those who do not have
intellectual disabilities (Ouellette-Kuntz,
2005;Bittles et al., 2002; Durvasula & Beange
2001)”
Emerson & Durvasula, 2005
Journal of Applied Research in Intellectual Disabilities
Volume 18, p95
How are health indicators typically
measured?
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Population Census
Vital Statistics / Registration System
Population Based (Household) Surveys
Smaller in-depth Surveys
Hospital / Health Centre Records – “point of
contact data”
Problems with this approach
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Overall, existing health surveys tend to exclude PWID or are
inappropriate
(Walsh, Kerr & van Schrojenstein Lantman-de Valk, 2003)
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Hinders attempts to monitor inequality in chronic disease
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Existing surveys don’t help to explain inequality
(Ouellete-Kuntz, 2005)
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Do not include ‘modifiable factors’: e.g., lifestyle, social networks,
living conditions, access to services (Ouellete-Kuntz, 2005)
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To identify and operationalise health indicators relevant to
PWID
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To develop a survey instrument which includes the 18
indicators
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To pilot the new survey
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To gather data using the finalised survey on a sample
(N=100) in each of 14 EU countries.
Prevalence
Living Arrangements
Demographics Life Expectancy
Daily Occupation
Income/SES status
Health Status
Epilepsy
Oral Health
Body Mass Index
Mental Health
Sensory
Mobility
Health Check
Physical Activity
Determinants
of Health
Health Promotion
Challenging Behaviour
Psychotropic
Medication Use
Health Systems
Specific training
for Physicians
Hospitalisation &
Contact with
Health Care
Professionals
Operationalising the Indicator Set
Survey Format & Structure
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The bulk of the survey is administered as a
semi-structured interview – either with the
PWID, with their carer, or both.
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Part of the survey is posted to the carer for
completion before the interview is conducted.
Who is the most appropriate person to
respond to health surveys about PWID?
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Participatory research advocates that PWID
act as research respondents at the very least.
But, what proportion of PWID would actually
be able to respond to this type of survey?
Not tested with respect to health surveys, so
can we learn from the literature on quality of
life assessment?
Subjective wellbeing
Objective conditions
Physical wellbeing
Emotional wellbeing
Social wellbeing
Material wellbeing
•Health
•Fitness
•Mobility
•Safety
•Income
•Housing
quality
•Possessions
•Transport
•Neighbourhood
•Personal
relationships
•Community
involvement
Values & Importance
Civic wellbeing
Productive wellbeing
•Competence
•Choice
•Independence
•Productivity
•Mentalhealth
•Status
•Sexuality
•Faith
•Selfesteem
•Citizenship
•Voting
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Like the concept of ‘satisfaction’, the notion of
‘health’ is fairly abstract.
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Given language limitations of people with
intellectual disabilities, what proportion can
express satisfaction, and what proportion can do
so without bias?
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For people who do not have the understanding
or language to express satisfaction … can other
people (staff, carers) validly represent their point
of view?
Study design
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Various subjective and objective measures of choice,
constructive activity, and social and community
integration.
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Stratified random sample of 154 people who lived in 47
settings.
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Residents’ adaptive behaviour also assessed.
Levels of non-response and
response bias
100
80
60
%
40
20
0
0-25
26-50
non
response
71-80
51-60 61-70
rank ABS score
CQ
acquiesce
CQ
recency
81-90 91-100
ComQol
acquiesce
Respondents who did not show
response bias
minimum maximum mean
standard
deviation
mean rank
ABS score
52
97
82
11.6
BPVS
standardised
scores
39
118
62
21.1
the mean BPVS standardised score (62) converts to
an equivalent language age of 9 years 4 months
Correspondence between selfreport and staff-report
ComQol Satisfaction (% scale max) (n=49, rho=0.16, p>0.05)
100
self-report
80
60
proxy
40
20
0
respondents
Correspondence between selfreport and staff-report
Choice Questionnaire (n=56, rho=0.74, p<0.01)
100
80
self-report
60
proxy
40
20
0
respondents
What we did: The ‘Pilot Protocol’
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Sample (same area and stratification as main study):
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8 people in each MS
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Reliability:
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2 with SLD with family
2 with MLD with family
2 with SLD in residential care
2 with MLD in residential care
For 2 of the 8 people in each MS the interview was repeated with a different
respondent
Evaluation forms
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Consent / refusal rates
Time taken to complete (PWID & Carers)
Item-by-item evaluation (e.g., understandability, range of options etc.)
Data input
What we found out
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Ethics – despite delays, approval granted in all countries. Some small amendments to consent
forms & some additional assurances about confidentiality needed in some countries.
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Consent / refusal rates: In most countries all those who were asked gave consent or assent.
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Interview duration: PWID – mean = < 1 hour; Carers – mean = 45 minutes
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Content
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Some additional items suggested (e.g., autism, diet, satisfaction with treatment)
Some items need additional response options (e.g., seizure frequency)
Some items need reformatting for consistency (e.g., ‘no’ option for list of health problems)
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Reliability – Based on 8 respondent pairs precise item test-retest reliability was 89% and
precise item inter-respondent reliability was 81%. (i.e., when 2 different carers were
interviewed about the PWID).
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Did not explore correspondence between PWID and carers interviewed separately.
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The psychometric properties of the instrument, including reliability data, will be explored fully
within the main survey.
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Database – ‘fit for purpose’
Health Conditions
H'-t hyroidism
Const ipat ion
M igraine
Tumour
Ulcer
Art hrit is
Bronchit is
St roke
Heart At t ack
Hypert ension
Cat aract
Diabet es
Allergy
Ast hma
0
10
20
30
40
50
60
70
80
Belgium
Finland
France
Germany
Ireland
It aly
Net herlands
Romania
Slovenia
Spain
UK
90
100 %
Lifestyle
100
80
%
60
40
20
0
Smokers
Belgium
Ireland
Slovenia
Drinkers
Finland
Italy
Spain
France
Netherlands
UK
Sedentary
Germany
Romania
General Health
6% 0%
28%
16%
Very Good
Good
Fair
Bad
Very Bad
50%
Access to Healthcare
Dentist
Inpatient
Outpatient
A&E
GP
Physiotherapy
Occupational Therapy
Speech Therapy
0
10
20
30
40
50
60
70
80
90
100
%
Belgium
Finland
France
Germany
Ireland
Italy
Netherlands
Romania
Slovenia
Spain
UK
Health Checks
Cholesterol
Blood Pressure
Hepatitis B
Tetanus
Influenza
Full check up
0
10
20
30
40
50
60
70
80
90
100
%
Belgium
Finland
France
Germany
Ireland
Italy
Netherlands
Romania
Slovenia
Spain
UK
Conclusion
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The Pilot Study has demonstrated feasibility of the questionnaire
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The questionnaire has been refined on the basis of the pilot and named as
the ‘Pomona 18’
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Based on research on the QOL of PWID it is likely that only the most able
PWID will be able to act as respondents to the Pomona 18
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However, the QOL literature also indicates that using proxy respondents
should be acceptable when PWID cannot self-report because all the Pomona
18 is essentially an objective measure
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Now have an idea of the type of information which can be expected from the
study
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[email protected]
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http://www. pomonaproject.org
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Pomona I
http://ec.europa.eu/health/ph_projects/2002/m
onitoring/monitoring_2002_05_en.htm
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Pomona II:
http://ec.europa.eu/health/ph_projects/2004/a
ction1/action1_2004_14_en.htm