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Extended setsIssues and way forward
Margie Schneider
6th Meeting of the Washington GroupKampala,Uganda10 – 13th October 2006
Outline
Tasks identified for workgroup on the extended measures
Plan for extended sets Purpose of measure Rationale and justification for developing one
or more extended sets International comparability
What sets? More detail on same domains Additional domains Measurement of participation Measurement of environmental factors
Outline (contd)
Age of onset, duration and frequency
Different purposes and number of sets required
Proposal for extended sets Describing population functioning Increasing coverage of the ICF
framework Other issues
Way forward and reporting to Dublin meeting
Tasks identified for workgroup on the extended measures
Develop a plan (blueprint) for extended sets addressing purposes, rationale, justification for the sets and international comparability;
Possible additional domains for addressing equalisation of opportunities + recommend additional domains for inclusion on one extended set;
Start on development of extended set for environmental factors
Consider inclusion of age of onset of problem
Develop purpose of extended set and decide on number of extended sets
Some points to note
Review tasks Set out issues in each task Make proposals for some extended
sets using existing sets Look at how sets best serve the use
of the overall ICF framework Document sent out for review –
presentation takes into account first round of comments from workgroup
Membership of workgroup on extended sets
Catriona Bates Ken Black Genara Rivera Beth Rasch Romulo Virola Carlotta Besozzi Joseph Muli-Kalavi Marijke de Kleijn Barbara Altman Elena de Palma
Anne Good Emmanuelle Cambois Don Lollar Dan Mont Gunilla Davidsson Nevin Uysal Ros Madden Xingyan Wen Nenad Kostanjsek Margie Schneider
(leader)
Plan for extended sets : Purpose of measure
Short/Core set: a set of comparable measures to be used on
Censuses Description of population functioning on 6
domains Analysis of these data (demographic variables)
with other information to look at outcomes such as employment, education, recreation, social inclusion, access to services, etc.
Extended set(s): more detailed level of measurement Complement Census data Broader/deeper identification of population
(demographic variables) for more detailed outcomes analyses
Extended sets should……..
Identify in more detail the target group (more comprehensive description of population functioning) – ‘disability status’ (?activity limitation status or functional status) with different cutoff points for this (e.g. low, middle and high estimates)
Cover necessary measures to allow for outcomes analysis
Other areas of questions to collect data on the overall experience of disability (living with a health condition)
So need more than one extended set…
Purpose of measure : Rationale and Justification
Module to be used on range of surveys or full survey
‘extendedness’: In depth on same 6 domains as core set Adding domains Asking about participation (outcomes) Asking questions on Environmental
factors
ICF Framework
Using the ICF Framework and broad definition: Disability is the outcome of an interaction
between the person’s health condition and the context in which they live
Measures of the WG = operationalisations of aspects of the ICF
Short set = very basic activities and some body functions
Extended sets to operationalise other aspects to provide full picture (more complex A and P and E)
Looking beyond ICF : Quality of life, satisfaction, etc.
Other populations: children, elderly, institutionalised populations
Purpose of measure : International comparability
Issues to consider: Wording of question: use of ‘difficulty’ rather
than ‘disability’. Using generic domains but culture specific
assessments: e.g. dressing = ‘carrying out coordinated actions and tasks of putting on an taking off clothes and footwear in sequence and in keeping with climatic and social conditions’ (ICF, d450).
Assessment will vary – wearing a sari vs West African head dress vs skirt and top, etc.
Use of time references in more detailed questions (How can we make this comparable?)
More detail on same and additional domains
Which domains: Vision (B), hearing (B), mobility (D), cognition
(B), Self care (D) and Communication (D) + Ones that pick up gaps identified in short set:
mental illness, intellectual disability, children………
Approach – with and without technological and personal assistance (basics of environment)
What existing sets could be used? (WG field test, WHO DAS II, EuroReves work, Australian sets, Canadian sets)
Participation
What do we mean by ‘participation’ Involvement in life situations More complex domains of functioning
(education, employment, social interactions, political involvement, etc.)
Performance on D domains – i.e. in usual/current environment
Being socially included ?? ??
WG – Measuring participation
Short set: A or P? (in ICF terms) Extended sets: A or P? What notion should we be using? Maybe avoid the issue and look at …
Some basic activities More complex activities With and without technological and/or personal
assistance With and without effect of broader
environment Even with complex activities need to know with
and without EFs Participation as outcomes (WG)
Environment
Immediate environment – technological and personal assistance (good development of Qs)
Built environment – some Qs Attitudinal environment – how developed? Services – reasonably developed What is feasible in self report or proxy
mode and what should be collected through environmental audits
Existing work on EFs: ICF checklist, CHIEF, etc.
Age of onset, frequency, duration and ? Age of onset: Important variable in
determining experience of disability Onset of what?
Health condition Impairment Activity limitations What person gives us – country variations
based on access to health care services
Differentiation of permanent vs temporary difficulties – what time period? (6 – 12 months)
Current difficulties or capacity How often for frequency
Different purposes – some suggestions Equalisation of opportunities / monitor
trends in participation (broad conceptualisation of term)
Assessing service needs and gaps (e.g. needed vs received)
Assessing environmental context contributing to full or limited social participation
All need a basic capturing and description of target population – activities (basic +) to get demographic variable
What extended sets?
Priority: More detail on same domains (+ additional
domains) with and without assistance
or Measurement of participation (How do we
define participation – ICF ‘performance’ or more ‘complex aspects of human functioning’)
or Measurement of environmental factors
or Satisfaction and quality of life?
How many extended sets?
Questions for demographic variable on ‘functional status’: What body functions and activities are
required? (more detail on these domains and more domains)
Start with one set Questions for outcome measurements –
Areas of life that are most important: Education Employment Recreation Social interactions Making decisions about one’s own life Political involvement ??
Proposal for extended sets
Demographic variable – ‘functional status’ : describing pop functioning WG field and cognitive test questions UNESCAP questionnaire Australian, Canadian, EuroReves, Eurostat, etc
– all their past and current efforts SINTEF matrix (all D domains from ICF)
Outcome measures: ensure that all relevant aspects of outcomes
are included. Use existing country approaches to education,
employment + develop for other aspects Cultural specificity
Proposal for extended sets (contd)
Environmental factors Lists of assistive devices being used and in good
working order (including medication) Availability of personal assistance/support by whom,
frequency of availability in relation to need, etc. Access to services needed – health, education,
labour, welfare, social assistance, housing, etc. Accessibility of the built environment Attitudes of others in household and community,
service providers, etc The natural environment and aspects such as
crowding (could be obtained from basic household demographics)
Policies ??
Increasing coverage of the ICF framework
Functional status: Ensure whole range is in the demographic variable set – body functions, structures (difficult on self report), Activities/participation
Outcomes: Especially later chapters can inform what aspects of outcome to be considered.
Environment
Other aspects – beyond ICF
Health condition Quality of life Satisfaction ?? ??
Issues Aspects such as wording, response options, etc. Series of nested sets – at least for functional
status Short set can be found in longer set Consistency across sets
Cultural comparability: is it as important in extended set as for short set? Cultural specificity of outcomes
Methodological issues in using extended sets : Following screening and only to ‘identified’
population (e.g. as in SINTEF survey) extended Qs to whole population
Use in administrative records
Way forward Prioritise functional status measures
across whole ICF set with and without assistance
Consider outcome measures only to some extent
Look at existing sets that could be used : Link up with
Eurostat Euroreves Budapest initiative ?? Other developing country initiatives
Review our WG, UNESCAP and SINTEF results with ‘extended set’ perspective – further analysis
Way forward (contd)
Review of findings of test results from other existing sets within the next year
Review all available data for adequacy in capturing children, elderly people and institutional populations.
Some small scale qualitative cognitive testing especially in developing countries
Revise Extended sets document and circulate in the workgroup
Look at potential for other sets on impact of violence and war
Reporting at the Dublin meeting…. Ongoing discussion within the workgroup as to
theoretical framework pertaining to extended sets Review of as many existing data sets or reports
on testing as are accessible Proposal for which sets to use Theoretical paper on how the extended sets
meets the following: Captures target population Provides means to measure and monitor outcomes
(equalisation of opportunities) Uses the full ICF framework Works with Short set
Potential of developing another short set in between extended and general short set relating to A/P and E.
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