# Presentation: 401153

## Extended Questions Sets:

**Barbara M. Altman**
**Emmanuelle Cambois**
**Jean-Marie Robine**

**Extended Questions Sets:**
**Purpose, Characteristics and Topic Areas**** **

**Fifth Washington group meeting on disability statistics**
**Rio de Janeiro, September 21-23d**

## 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

**Initial objective of the Washington group**

**The purpose was established, and questions developed that are now being tested in a variety of venues**** **

## Further step: objective of the working group 3

-  To develop **extended sets of questions** culturally comparable

**Further step: objective of the working group 3**

-  To further **document the disability pattern** worldwide

- To **select the purpose**
- To identify **domains and the conceptual components**
- ...

**Start again the same process:**

## Various issues to be discussed...

**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

**Various issues to be discussed...**

## Evidence for potentially unlimited domains to be explored to provide additional information about disability in surveys

** ****Develop an organized process to create, test and approve extended sets**

- Evidence for **potentially unlimited**** ****domains** 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**_

## +

**Select the purpose/s and translate into content**

- We identified in the WG three major classes of purposes + 1:

- Assess** equalization** **of 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...

## Equalization of opportunities

***Equalization**** ****of opportunities***

**Objective:** determining functioning limitations at risk of restricted participation

**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

**Policy relevance: **assessing level of functioning and level of integration of people with functional limitations

## Services needs

***Services needs***

**Objective:** assessing today’s and future needs in terms of care, assistance, adaptation programs, technical devices

**Measurement**: devoted to the whole population or specific groups, assessing needs and unmet needs

**Policy relevance: **planning needs resulting from population aging and improving integration of people with functional limitations

- Within the set on functional limitations: difficulties when using no aid / residual difficulties with aid...

- Specific questions on needs and unmet needs

## Monitoring trends

***Monitoring trends***

**Objective:** being able to monitor how functional status and participation change with time

**Measurement**: devoted to the whole population or specific groups, assessing functional health and participation

**Policy relevance: **assessing impact of social, economic, demographic situations and patterns / evaluation of policies

- Repeating measurement of functional status

- Developing specific measures of social participation (work, leisure, social activities...)
- 	Cross-culturally neutral social activities

## Contextual circumstances 

***Contextual circumstances ***

**Objective:** Identifying barriers and facilitators in every day environment

**Measurement**: devoted to the whole population or specific groups, assessing contextual circumstances

**Policy relevance: **improving quality of life and integration of people with functional limitation / reducing needs for assistance

- 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 daily environment

##  Establish the characteristics of each of the extended set/s

** ****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**

##  The continued emphasis on international comparability with consideration for flexibility and special needs

** ****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?

##  Review existing measurement instruments and the literature (limits and robustness...)

** ****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. **

## The European experience 

**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**

## To summarize...

**Assessing ****equalization of opportunity**
**Assessing ****services needs**
**Assessing ****environmental context** contributing to full/restraint social participation
**Monitoring** **trends in participation**

**To summarize...**

- We suggest developing four extended sets of question in the framework of the following selected purpose:

## To summarize...

**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**** **

**To summarize...**

- To facilitate one or several of these purposes, we suggest research on the following type of survey instruments:

## How to proceed next ?

**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 ?**

**How to proceed next ?**

**Discussing suggestions, proposals made in this paper...**

**But, on the basis of these proposals, still issues to be debated:**