Extended sets Issues and way forward

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Extended setsIssues and way forward

• Margie Schneider
• 6th Meeting of the Washington Group
• Kampala,Uganda
• 10 13th October 2006

2
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

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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

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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

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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

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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)

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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

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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

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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

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ICF Framework

• Using the ICF Framework and broad definition
• Disability is the outcome of an interaction
  between the persons 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

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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?)

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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)

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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
• ??
• ??

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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)

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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.

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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

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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

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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?

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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 ones own life
• Political involvement
• ??

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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

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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
• ??

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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

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Other aspects beyond ICF

• Health condition
• Quality of life
• Satisfaction
• ??
• ??

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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

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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

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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

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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.