Pr

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

1. Develop an organized process to create, test and
   approve extended sets
2. Select the purpose/s and translate into content
3. Establish the characteristics of each of the
   extended set/s
4. The continued emphasis on international
   comparability with consideration for flexibility
   and special needs
5. Review existing measurement instruments and the
   literature describing the limits and robustness
   of these instruments

5

1. 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

6

1. 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
7
Equalization of 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 todays 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 daily environment

11

1. 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

1. 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

1. 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
• Monitoring trends in participation

16
To summarize
To facilitate one or several of these purposes,
we suggest research on the following type of
survey instruments

1. Functional health status functional limitations,
   activity restriction
2. Use, needs, satisfaction with technical devices
   and human assistance or financial support
3. Social participation at school, at work, at home,
   for leisure
4. 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 ?