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

3. 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

4. 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

5. 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

6. 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)

7. 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

8. 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…

9. 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

10. 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

11. 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?)

12. 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)

13. 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 ??

14. 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)

15. 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.

16. 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

17. 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

18. 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?

19. 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 ??

20. 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

21. 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 ??

22. 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

23. Other aspects – beyond ICF  Health condition  Quality of life  Satisfaction  ??

24. 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

25. 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

26. 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

27. 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.