Extended sets Issues and way forward Margie Schneider 6 th Meeting of the Washington Group Kampala,Uganda 10 – 13 th October 2006.

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.