General Disability Measures Used in Developed Countries: Question Characteristics Beth Rasch representing the collaborative work of the UN, ISTAT, and the U.S. National Center for Health Statistics

1/9/03 National Center for Health Statistics, CDC Background 1 st WCG Meeting A question typology was proposed by Barbara Altman to categorize the types of questions that currently exist to measure disability A matrix was also proposed linking the purposes of measurement with question characteristics We also began collecting general disability measures that countries have used or are using 2 nd WCG Meeting These documents have been revised and will be used as reference materials for this presentation (see handouts)

1/9/03 National Center for Health Statistics, CDC Purpose Provide examples of general disability measures used in developed countries that represent the range of question types in the typology Describe characteristics of these measures relative to the matrix Identify matrix characteristics that are not captured or are only partially captured in general disability measures from developed countries

1/9/03 National Center for Health Statistics, CDC Methods Disability measures were chosen from developed countries if: –They were general measures –Data were available –The questions added to the depiction of question typologies –The questions added to the depiction of question characteristics

1/9/03 National Center for Health Statistics, CDC Question typology Type 1: Impairment identification Asks about the presence of an impairment based on different parts of the body system Type 2: Identification of a disability Asks directly if the person is disabled; may also identify the disability in terms of functional limitations Type 3: Indication of limitations in activities / participation Asks about limitations in activities or participation Type 4: Combination questions Asks whether respondent has difficulty / limitations with body structures or functions AND performing activities or participating Type 5: Questions based on legal definitions of disability

1/9/03 National Center for Health Statistics, CDC Results Type 1: Impairment identification Australia: 2001 Disability Module (question #1) I would now like to ask about any conditions you may have, that have lasted, or are likely to last, for six months or more. Do you have any of these conditions? Which ones? Sight problems not corrected by glasses or contact lenses Hearing problems Speech problems Blackouts, fits, or loss of consciousness… (list continues; see handout)

1/9/03 National Center for Health Statistics, CDC Results Type 2: Identification of a disability Hungary: 1990 Census (questions #1-2) Have you any physical, mental deficiency, or deficiency of the sense organs? Yes / No a) If so, of what kind? Physically defective Defective in motion Mentally defective Hard of hearing… (list continues; see handout)

1/9/03 National Center for Health Statistics, CDC Results Type 3: Indication of limitations in activities / participation Israel: 1999/2000 Health Survey (Screener question) Does anyone in the household (aged 5 and over) have a physical disability that makes it difficult for him to carry out day to day activities, such as: movement from place to place, eating, dressing, control over sphincters, etc. (disabilities lasting six months or more)? Yes / No

1/9/03 National Center for Health Statistics, CDC Results Type 4: Combination questions Australia: 2001 Disability Module (question #2) Still thinking of conditions lasting 6 months or more, are you restricted in everyday activities by any of these? Which ones? Shortness of breath, or difficulty breathing? Chronic or recurring pain A nervous or emotional condition (list continues; see handout)

1/9/03 National Center for Health Statistics, CDC Results Type 4: Combination questions United States: 2000 Census Does this person have any of the following long- lasting conditions: (a) Blindness, deafness, or a severe vision or hearing impairment? Yes / No (b) A condition that substantially limits one or more basic physical activities such as walking, climbing stairs, reaching, lifting, or carrying? Yes / No

1/9/03 National Center for Health Statistics, CDC Results Type 5: Questions based on program eligibility (legal definition of disability) Poland: 1996 POLHIS (Screener question #2) Do you have a valid certificate of disability? Yes, disability was stated as permanent Yes, disability was stated as temporary No Don’t know (if proxy is reporting)

1/9/03 National Center for Health Statistics, CDC Empirical matrix: description of question characteristics (see handout) ICF domain Duration specified Response categories Neutral terminology Australia: 2001 Disability Module BS, BF, A/P Long term (6 months) DichotomousNo Canada: 2001 Census BF, A/PNoYes, sometimes Yes, often No Yes Israel: 1999/2000 Survey BF, A/PLong term (6 months) DichotomousYes (but uses word disability)

1/9/03 National Center for Health Statistics, CDC Results: question characteristics Use of a general measure Several countries use screener questions to identify persons with disability (Canada, New Zealand) These questions are used to identify persons for more extensive disability surveys or sets of survey questions Some countries rely on more extensive question sets or surveys (i.e. more than 2-3 questions) to identify the population of persons with disability, such as Australia (Disability module and Survey of Disability, Ageing, and Carers)

1/9/03 National Center for Health Statistics, CDC Question characteristics: ICF domain  BS, BF, and A/P domains are represented in questions from developed countries with an emphasis on A/P  On the whole, the domain of environment is not captured  Questions referring to AT use provide some information about environment Australia: Disability module (question #6) Even though you can do these self-care, mobility and communication tasks without difficulty, do you use any aids to assist with these tasks? Yes / No

1/9/03 National Center for Health Statistics, CDC Question characteristics: reference to mental functioning United States: 2000 Census Because of a physical, mental, or emotional condition lasting 6 months or more, does this person have any difficulty in doing any of the following activities: Learning, remembering or concentrating? Dressing, bathing, or getting around inside the home? (list continues; see handout)

1/9/03 National Center for Health Statistics, CDC Question characteristics: neutral terminology Canada: 2001 Census Does this person have any difficulty hearing, seeing, communicating, walking, climbing stairs, bending, learning or doing any similar activities? Yes, sometimes Yes, often No Does a physical condition or mental condition or health problem reduce the amount or the kind of activity this person can do: at home? at work or at school? in other activities, for example, in transportation or leisure? Yes, sometimes Yes, often No

1/9/03 National Center for Health Statistics, CDC Question characteristics: norm / reference New Zealand: 2001 Census Does a health problem, or a condition you have (lasting 6 months or more) cause you difficulty with, or stop you doing: a) Everyday activities that people your age can usually do b) Communicating, mixing with others or socializing c) Any other activity that people your age can usually do d) No difficulty with any of these?

1/9/03 National Center for Health Statistics, CDC Summary: Capture of matrix characteristics Some developed countries are not using general measures ICF domain: environment not represented Duration usually specified as lasting > 6 months Response categories are generally dichotomous Attribution to a health condition usually present Most countries are using some language that could be interpreted negatively, such as the word “limited”

1/9/03 National Center for Health Statistics, CDC Summary: Capture of matrix characteristics A norm or reference is rarely used Questions are generally complex (respondent has to consider more than one concept simultaneously) Mental functioning is usually included but may not be differentiated into cognitive versus psychological / emotional components A wide variety of descriptors are used to characterize ability to perform body functions, activities or participate such as difficult, problem, reduced, limited, restricted, or unable