Barbara M. Altman Emmanuelle Cambois Jean-Marie Robine

1. Fifth Washington group meeting on disability statistics Rio de Janeiro, September 21-23d Extended Questions Sets: Purpose, Characteristics and Topic Areas Barbara M. Altman Emmanuelle Cambois Jean-Marie Robine

2. Initial objective of the Washington group • The development of an internationally comparable sets of questions to measure “universally” disability patterns • To first focus on a small instrument / “census” format • To select the purpose of such a “census” questions on disability • To identify domains and the conceptual components with which the purpose would be achieved The purpose was established, and questions developed that are now being tested in a variety of venues

3. Further step: objective of the working group 3 • To develop extended sets of questions culturally comparable • To further document the disability pattern worldwide Start again the same process: To select the purpose To identify domains and the conceptual components …

4. Various issues to be discussed… • Developanorganized process to create, test and approve extended sets • Select the purpose/s and translate into content • Establish the characteristics of each of the extended set/s • The continued emphasis on international comparability with consideration for flexibility and special needs • Review existing measurement instruments and the literature describing the limits and robustness of these instruments

5. Develop an organized process to create, test and approve extended sets Evidence for potentially unlimiteddomains to be explored to provide additional information about disability in surveys Need a process to use our resources efficiently: • The development of a reasonable number of extended question sets as well as specification of the topic areas. • A division of labor among the group members to create the question sets based on persons with expertise in a particular topic area • To provide general guidelines for purpose, length and other characteristics of extended sets, resulting in extended sets with uniform characteristics

6. Select the purpose/s and translate into content We identified in the WG three major classes of purposes + 1: • Assess equalizationof opportunities for participation (employment, resources, schooling…) • Assess needs for services (assistance, technical devises, pensions…) • Monitor trends in functioning in the population and participation • + • Identify contextual circumstances that contribute to the disability, lack of social integration or participation Suggestions for each purpose…

7. Equalizationof opportunities Objective: determining functioning limitations at risk of restricted participation Policy relevance: assessing level of functioning and level of integration of people with functional limitations Measurement: assessing basic actions or functioning limitations • By extending the number of domains covered by the initial small set (mental health, balance…) • By focusing on a specific domain through the collection of more in depth information

8. Services needs Objective: assessing today’s and future needs in terms of care, assistance, adaptation programs, technical devices Policy relevance: planning needs resulting from population aging and improving integration of people with functional limitations Measurement: devoted to the whole population or specific groups, assessing needs and unmet needs • Within the set on functional limitations: difficulties when using no aid / residual difficulties with aid… • Specific questions on needs and unmet needs

9. Monitoring trends Objective: being able to monitor how functional status and participation change with time Policy relevance: assessing impact of social, economic, demographic situations and patterns / evaluation of policies Measurement: devoted to the whole population or specific groups, assessing functional health and participation • Repeating measurement of functional status • Developing specific measures of social participation (work, leisure, social activities…) • Cross-culturally neutral social activities

10. Contextual circumstances Objective: Identifying barriers and facilitators in every day environment Policy relevance: improving quality of life and integration of people with functional limitation / reducing needs for assistance Measurement: devoted to the whole population or specific groups, assessing contextual circumstances • Neutral questions on every day context (access to various places, time for transportation to work…) • Questions on difficulties due to environment: how adapted is the dailyenvironment

11. Establish the characteristics of each of the extended set/s • Number of questions sets to be considered • Homogeneity or diversity • Size of extended question set/s • Sequencing or prioritizing of the extended sets for implementation and testing: • The development of question orientation, and wording, including answer categories • The cultural compatibility of the conceptual elements chosen to be developed into questions

12. The continued emphasis on international comparability with consideration for flexibility and special needs Aspects of participation and environments can be different between national areas How much and what kind of flexibility can we consider and still feel we are providing appropriate extended sets to facilitate international comparison of the data?

13. Review existing measurement instruments and the literature (limits and robustness…) • Avoiding reinventing the wheel and keep close to already existing things • Benefiting from previous research on how to measure things • Ensuring that you do not impose new instruments in countries where valuable instruments are already in use To make sure that the final proposal would be attractive enough to be accepted by public health policy and survey makers.

14. The European experience Countries are interested in readily and comparable “modules of questions” taken “off the shelves” to be implemented in their own survey whenever they need comparable information on such aspects. Four modules exist (background variables / health and functional health status / prevention and behaviours / use of health care services) Call from Eurostat for developing a fifth one on handicap and contextual circumstances

15. To summarize… We suggest developing four extended sets of question in the framework of the following selected purpose: • Assessing equalization of opportunity • Assessing services needs • Assessing environmental context contributing to full/restraint social participation • Monitoringtrends in participation

16. To summarize… To facilitate one or several of these purposes, we suggest research on the following type of survey instruments: • Functional health status: functional limitations, activity restriction • Use, needs, satisfaction with technical devices and human assistance or financial support • Social participation at school, at work, at home, for leisure… • Environmental barriers or facilitators

17. How to proceed next ? Discussing suggestions, proposals made in this paper… But, on the basis of these proposals, still issues to be debated: • Proposing working groups with experts on these 4 topics to be translated in indicators (one should be founded by Eurostat…) ? • Discussing all together priority for one or two among theses 4 topics ?