# Presentation: 335841

## Extended setsIssues and way forward

- Margie Schneider
- 6th Meeting of the Washington Group
- Kampala,Uganda
- 10 – 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.