Internationally Comparable General Disability Measures

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Internationally Comparable General Disability
Measures

• Barbara M. Altman
• National Center for Health Statistics
• U.S.A.

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Session Objective

• Explain how the questions were developed
• Understand the limited choices associated with
  developing census questions
  
• Understand the product that results from the
  question set
  

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Key Components Involved in Development of
Questions

• Purpose of data collection in a census context
• Conceptual domains relevant to the measurement
  purpose
  
• Operationalization of domains to provide
  measurement tools

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Selection of purpose/s

• 3 major classes of purposes at aggregate level
• Service Provision
• Monitoring functioning in the population
• Assess equalization of opportunities
• 2 criteria for selection of a purpose
• Relevance
• Feasibility

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Purpose Service provision

• Seeks to identify those with specific needs,
  usually the most serious problems
  
• Requires detailed information about the person
  and the environment
  
• Influenced by the organization and structure of
  service organizations within a particular
  culture
  

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Purpose Monitoring functioning in the population

• Seeks to identify all those with activity or
  participation limitation
  
• Response comparability problematic since
  participation is culturally and environmentally
  determined

Population reporting work limitation
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Purpose Equalization of opportunities
Employed

• Seeks to identify all those at greater risk than
  the general population for limitations in
  activity or participation
  
• Disability as a demographic

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Selecting Primary Purpose

• All 3 purposes were accepted as valid
• Equalization of opportunity was identified as the
  primary purpose of concern
  
• Decision made to develop questions to meet this
  purpose
  
• Monitoring the level of functioning was seen as a
  secondary purpose

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Source of Concepts for Measurement ICF Model
Health Condition (disorder or disease)
Body Functions Structure
Activity
Participation
Environmental Factors
Personal Factors
Source ICIDH-2, 1999
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Moving from concept to measurement

• ICF as the conceptual model
• Common point of reference
• Common vocabulary
• Does not provide measurement questions or a way
  to measure the concepts

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Matching Purpose with Concept

• In order to address this purpose, we need to
  start by identifying persons who are at greater
  risk than the general population of experiencing
  restrictions in participating in role activities
  in the absence of any accommodation
• The source of our conceptual starting point is
  drawn from one of the primary domains of the ICF

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Selecting the Concept to Measure The Body

• Body Function and Body Structure
• Identifies type of impairment
• Impairments do not necessarily reflect levels of
  capacity or performance of the person
  
• They locate the anatomical part and the
  physiological functioning
  
• Person is not necessarily at risk
• We chose not to use this concept for our purpose

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Selecting the Concept to Measure Participation

• Participation involvement in a life situation
• Represent problems an individual may have being
  involved or integrated into their community
  
• Involves the coordination of both physical and
  cognitive functioning to accomplish multiple
  tasks within and environment.
  
• Is too culturally bound to serve our purpose.

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Selecting the Concept to Measure Activity

• Activity the execution of an action or simple
  task
  
• Activity is the deliberate execution of an action
  (walking) or task (dressing)
  
• Activities are building blocks of participation
• Activity limitations are a good and basic
  identifier of risk of limitations in
  participation in culturally defined roles.

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Locating Risk in the ICF Model
Health Condition
Body Functions Structure
Participation
Environmental Factors
Personal Factors
Source ICIDH-2, 1999
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Levels of Measurement Necessary to Capture
Activity and Participation
Mobility, seeing, hearing, learning
Level 1
Willful Action
Bathing, dressing, making meals, laundry
Specific Tasks
Level 2
Visiting with friends, going out to dinner
Individual Organized Activity
Level 3
Working at a job, being a parent, citizenship
roles
Cultural Role Participation
Level 4
Level of Complexity
Type of Measure
Measure Examples
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Measurement of equalization of opportunities

• Locate the definition of disability at the most
  basic level of activity/participation
  
• This level is associated with the ability or
  inability to carry out basic functions at the
  level of the whole person (i.e. walking, climbing
  stairs, lifting packages, seeing a friend across
  the room)

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Possible types of questions

• Questions that measure various domains of
  functioning such as mobility, cognition, sensory
  functions, etc.
  
• A qualifier would need to ascertain that the
  action was accomplished without human or
  mechanical assistance

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Possible Question Choices

• Mobility
• Walking
• Climbing stairs
• Bending or stooping
• Reaching or lifting
• Using hands
• Sensory
• Seeing
• Hearing
• Communicating
• Understanding
• Speaking

• Cognitive functions
• Learning
• Remembering
• Making decisions
• Concentrating
• Emotional functioning
• Interpersonal interactions
• Psychological well-being

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Criteria for Inclusion of Domains

• Cross cultural comparability
• Suitability for self-report
• Parsimony
• Validity across various methodological modes

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Number of Domains Selected

• Workgroup in agreement that Walking, Seeing and
  Cognitive functioning are core domains to be
  included
  
• Earlier discussions have indicated that 3-4
  questions are the maximum available in many
  censuses
  
• Limitations on number of domains a function of
  space and mode do we want to prioritize a
  domain list so that questions are available as
  space and other restrictions are relaxed?

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Draft questions for Censuses (general disability
measure)

• Do you have difficulty seeing even if wearing
  glasses?
  
• Do you have difficulty hearing even if using a
  hearing aid?
  
• Do you have difficulty walking or climbing
  stairs?
  
• Do you have difficulty remembering or
  concentrating?
  
• Do you have difficulty with (self-care such as)
  washing all over or dressing?
  
• Because of a physical, mental, or emotional
  health condition, do you have difficulty
  communicating (for example understanding others
  or others understanding you)?
• a) No - no difficulty c) Yes - a lot of
  difficulty
  
• b) Yes - some difficulty d) Cannot do at all

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Decision Elements

• Introductory clause
• Response options
• Use of a time qualifier
• Use or non-use of assistive devices

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What We are Not Identifying

• Are we screening or making estimates?
• Screening spreads the net widely attempts to
  reduce false negatives by accepting false
  positives.
  
• Estimates are more focused on specific areas and
  should be more reliable.
  
• We are seeking to represent a continuum of
  experience in an either/or context. We cant
  represent the total continuum.

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Meeting Products and Information

• Executive summary of meetings, presentations, and
  papers posted on the Washington Group website
  
• http//www.cdc.gov/nchs/citygroup.htm
• Publication of key papers in a special issue of
  Research in Social Science and Disability due
  this Fall

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• Willful action - reflects the individuals will
  to carry out basic volitional bodily operations
  at the level of the organism (whole person)
  deliberate use of basic senses and body actions

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• Specific tasks - The execution of a group of
  willful actions by an individual. It is an
  indicator of a series of related or more
  complicated actions necessary to accomplish an
  objective

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• Organized activity - the accomplishment of a
  variety of specific tasks and willful actions in
  order to complete an activity that is socially
  recognized or defined in a culture requires some
  form of interaction with others

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• Role participation - an individuals involvement
  in performing recognized cultural roles