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ISTAT. Washington City Group meeting Ottawa, 9-10 January 2003. General Measures of People with Disabilities in the European Statistical System (E.S.S.) presented by Elena De Palma. Italian National Institute of Statistics. ISTAT. General Measures of People with Disabilities in the E.S.S.

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  1. ISTAT Washington City Group meeting Ottawa, 9-10 January 2003 General Measures of People with Disabilities in the European Statistical System (E.S.S.)presented byElena De Palma Italian National Institute of Statistics

  2. ISTAT General Measures of People with Disabilities in the E.S.S. • Empirical Questions Matrix • Aim: describe main question characteristics • Activities: collect surveys and analyze wording of general measures • Results • MEHM (Minimum European Health Module) • Aim: evaluate similarity to the three MEHM questions • Activities: collect surveys and analyze wording used • Results

  3. Austria Belgium Denmark Finland France Germany Greece Hungary Italy Ireland Iceland Luxemburg Norway Portugal The Netherlands Spain Sweden Switzerland United Kingdom ISTAT Countries analyzed

  4. ISTAT Empirical Questions Matrix • Identification of surveys available Reference documents: • Eurostat Disability Project: Survey data on disability • Inventory of survey data on disability in EU Member States • European Health Interviews and Health Examination Surveys (HIS/HES database) Total surveys: 86

  5. ISTAT Empirical Questions Matrix • Survey selection criteria • Survey typology: all types • Time period: from 1998 to 2002 Total surveys: 53

  6. ISTAT Empirical Questions Matrix The term General Measure refers to a general question, or short set of questions, used to identify persons with disabilities. • Selection of General Measures of disability Data sources: • HIS/HES database • Documents sent directly by Countries analyzed Problems: • Lack of information: instruction, complete wording • Translation

  7. Survey Type Number Code Survey HIS 13 A01, B02, CH02, DK02, E02, EL02, F09, F1999, FIN06, I01, IS02, NL02, H01 General Social Survey* 10 B03, D02, F12, I04, IRL04, IS03, L02, N01, S02, UK11 Census 6 Bc02, EL01, IrlC02, P04, UK15, H02 HIS/HES 3 FIN03, IRL03, NL03 Disability 2 F02 Other 3 UK02, H03, H04 ISTAT Total 36 Table 1 Breakdown by survey type Total Surveys: 36 * Including Multipurpose Surveys and Standard of Living Surveys

  8. ISTAT Analysis criteria • Number of questions • ICF domains • Specification of duration of disability • Response categories • Attribution to health condition • Use of neutral terminology • Reference to norms • Complexity • Age oriented • Specific reference to mental health functioning

  9. ISTAT Analysis criteria Criteria added: • Mix of concepts • Need for help • Specific reference to work (context-activities)

  10. Number of questions Survey code Number of surveys % of total 1 CH02, D02, E02, EL01, EL02, F02, F12, F1999, FIN03, I01, I04, IRL03, NL02, S02, UK15, H02, H03 17 47,1 2 A01, B02, B03, Bc02, DK02, F09, FIN06, IRL04, L02, P04, UK02, UK11, H01 13 36,1 3 IS03 – H04 2 5,6 4 0 0 5 NL03 1 2,8 6 IrlC02 - N01 2 5,6 ISTAT 7 IS02 1 2,8 Total Number 36 100 Table 2 Distribution of surveys by the number of questions used to identify people with disabilities

  11.  Number of questions His General Social Survey Census HIS/HES Disability Other Number of surveys 1 6 4 3 2 1 1 17 2 6 4 2 1 13 3 1 1 2 4 0 5 1 1 6 1 1 2 ISTAT 7 1 1 TOTAL 13 10 6 3 1 3 36 Table 3Distribution of surveys by question(s) used as general measure and survey type Types of survey

  12. Number of questions BS BF A BS BF A P A P BS BF BS BF P A Total 1 6 6 2 2 1 17 2 9 3 1 13 3 1 1 2 4 0 5 1 1 6 1 1 2 ISTAT 7 1 1 TOTAL 15 12 4 3 1 1 36 Table 4I.C.F. Domain addressed by the general measure(s) I. C. F. DOMAINS

  13. ISTAT General Measures on People with Disabilities in the E.S.S.Main Results • 17 of 36 surveys (47.1%) use only 1 question and 13 (36.1%) use 2 questions • ICF domains most frequently covered are Activities,Body Structures and Body Function. • Activities included in 32 surveys* • Body Structures and Body Function in 31 surveys * • Participation in 17 surveys * • BF, BS, A, P in 12 surveys * *of 36 surveys

  14. ISTAT Main Results • 69.4% of surveys included specification of the duration of disability/chronic illness • Not all surveys use references to norms • 80.6% include attribution to health conditions • Answer categories: dichotomous 16 surveys; multiple: 11 surveys; both: 9 surveys. • Where one question only is used: 12 surveys dichotomous and 5 multiple • 1/3 of the total surveys use neutral terminology • 52.8% use no complex wording • 4 surveys use age oriented wording • 6 surveys investigate “need for help” • 9 surveys include specific reference to mental health functioning

  15. ISTAT Main Results • Generally the variability in wording is due to the introduction of more specific information, e.g. on health conditions, cause of illness, etc. • When activity and participation limitations are investigated, other concepts are added such as need for help or limitation due to health conditions/disabilities/handicaps.

  16. ISTAT Main Results • Taking into consideration the number of questions and the type of ICF domains that they refer to, it is evident that: • When 1 question is used there is great variability in its wording. Despite this variability, 15 of 17 surveys refer to Activity Limitations and only 2 refer to BS and BF. • When 2 questions are used there is more homogeneity: in fact the first addresses chronic illness and the second limitations in activities or activities and social participation.

  17. ISTAT Fully harmonized EU-wide surveys and general measures of disability • European Community Household Panel • European Labour Force Survey • Survey on Income and Living Conditions

  18. ISTAT Fully harmonized EU-wide surveys and general measures of disability • ECHP • The first question investigates the health/disability condition (BS, BF) and the second limitations in activities. • Main question characteristics: refers to BS, BF and A; duration of chronic condition or disability is not specified; wording is not age oriented; neutral terminology is not used; the syntax is not complex but there is a mix of concepts in the wording; a specific reference to mental health problems is included. • Activity limitations are investigated by referring to health condition, and without reference to norms or to work context and job activities. Need for help is not included. • The answer categories are dichotomous (in the first question) and multiple (in the second).

  19. ISTAT Fully harmonized EU-wide surveys and general measures of disability • Labour Force Survey 2002 • LFS uses a single question as a general measure for screening respondents for the specific module on “Employment of disabled people”. The question is: “Do you have any longstanding health problem or disability? Yes/ No”. • Main question characteristics: it refers to BS and BF of the ICF domains, non-neutral terminology (“disability”) is used; there is mix of concepts but the wording is not complex; there is no reference to mental health functioning or work/job activity, or to need for help. The question is not age oriented and does not make any reference to norms. The duration of the health problem is specified (“longstanding”).

  20. ISTAT MEHM Minimum European Health Module • The Module includes three Global Questions covering: • Perceived Health (WHO Euro) • Chronic Morbidity (EuroHIS) • Activity Restriction (EuroREVES)

  21. ISTAT MEHM Minimum European Health Module • How is your health in general? • Very good/ good/ fair/ bad/ very bad • Do you have any long-standing illness or health problem? • Yes / No • For at least the past 6 months, have you been limited in • activities people usually do because of a health problem? • Yes, strongly limited • Yes, limited • No, not limited.

  22. ISTAT MEHM (1) Self Perceived Health Question Characteristics: Self Perceived Health (SPH) is a global measure that includes the different dimensions of health, i.e. physical, social and emotional function and biomedical signs and symptoms. Domain: The reference domain is a general state of health Format: The proposed indicator is an absolute, single-item measure of SPH Age reference: The question is not age related Time reference: The question is not time limited. The exact wording of the question is absolute in that it omits any reference to either an age or time comparison. General wording: The reference is to ‘health in general’ rather than ‘present state of health’. The question is not intended to measure temporary health problems. Response categories: Five: Very good, good, fair, bad, very bad.

  23. ISTAT MEHM (1) Self Perceived Health Analysis criteria: Absolute format: refers to questions that do not specifically ask the respondents to compare their health with others of the same age or with their own previous or future state of health. Age reference: Where the respondents are specifically asked to compare their health with others of the same age. Time reference: Where the wording includes a reference time. Verbs used (What the respondents have to answer): The phrasing of the question on respect to self-perceived-health. The verb used is reported. What the respondent must analyse: related to the object of the analysis. The different expressions used referring to “health” are reported. In general: Reports use of a generalizing word. Response categories: response categories (nominal or numerical) are reported.

  24. ISTAT MEHM (2) Chronic Morbidity Question Characteristics: The second global instrument of the MEHM is an open-ended question used to measure the global indicator on chronic morbidity Domain: BS- BF (ICF domains) Format: Absolute single-item measure Age reference Not age related Time reference Long standing Answer categories: Dichotomous (Yes/No) Terminology: Neutral How the question addresses mental functioning: Not directly: it is included in “illness/health problem”.

  25. ISTAT MEHM (2) Chronic Morbidity Analysis Criteria: Global approach: when the question simply asks if the person is suffering from / has a longstanding illness or health problem Specific approach: when the question asks what the disease is (with or without reference list) Time reference: the reference time given in the wording Long-standing/chronic: refers to concepts present in the wording Illness, condition or health problem: refers to concepts present in the wording Other concepts: refers to other concepts specific included in the wording. The words used are reported Use of neutral terminology: related to the use of words with neutral connotation Response categories: Dichotomous, Multiple

  26. ISTAT MEHM (3) Activity Limitations (GALI) Question Characteristics: ICF domain: Activities Capacity/Performance: The measure addresses Performance. Duration (long term/short term): 6 months, but is related to activity limitation Answer response categories: Nominal Scale Yes strongly limited,/ Yes, limited/ No, not limited). Causes of disability: General health-related problems as cause of the limitations. Terminology: Neutral words Reference to Norm: NO Complexity: NO Age-oriented: NO, there is no reference to specific type of activities. How the question addresses mental functioning: Not directly. It is enclosed in the concept of health problems

  27. ISTAT MEHM (3) Activity Limitations Analysis criteria: Time reference for activity limitation: related to time reference used in the question Norm reference: where comparison is requested with other people of the same age. Attribution to health: if the wording enclosed a reference to a health problem as a cause of the limitation in activities and social participation. Limited in activities in general: Whether the question does or does not indicate specific activities. Need of help: Whether the question asks if the person needs assistance in performing activities. Use of neutral terminology: related to use of words with neutral connotation. Response categories: The response categories are reported.

  28. ISTAT MEHM (3) Activity Limitations • Main Results from 26 surveys: • Time reference for activities limitation: no reference in 23 surveys • Norm reference is not used • Attribution to health conditions: yes in 22 surveys • Activity restriction: 17 surveys refer to “usual activities” – “everyday life” but add other information • Need for help: included in 5 surveys • Use of neutral terminology: 14 surveys • Response categories: 17 surveys use Multiple. Among these: • Severity of limitations in activity: 10 surveys refer to “degree” and 6 to “time”

  29. ISTAT MEHM: MainResults Total surveys: 53 • At least 48 of the 53 surveys selected have at least one question which can be related to MEHM. • half of these cover all three MEHM topics. • Differences to the instruments proposed by MEHM are due to greater specification of health condition or activity restriction. • The instruments used are generally quite similar to those proposed in the MEHM; differences may also be due to the translation from original language to English.

  30. ISTAT MEHM: Main Results Total surveys: 53 Among the 48 surveys: • Only 5 do not seem to ask questions on Self perceived health. • Only 9 do not seem to have any questions about long standing / chronic illness. • 24 use a global approach to investigate chronic morbidity, while 16 prefer a specific approach. • 7 have a question that refers both to long standing illness/disability and to limitations of activity. Among these, only 4 use another question on activity restriction with global approach. • 30 have a general question (global approach) on activity limitations* • 14 include all three questions, with global approach in the second. • 10 include all three questions, with specific approach in the second.

  31. ISTAT Special questions (1) Special general measure questions based on official recognition of disability • D01 Germany - Microcensus, 1999 (HIS) Is your handicap established by an official notice or have you made an appropriate application? • D05 German National Health Examination and Interview Survey 1998 (HIS) Do you have a disability which has been officially acknowledged by the appropriate body/pension office?

  32. ISTAT Special questions (2) Special general measure questions based on official recognition of disability • E04 Spain – Impairment, Disabilities and Health Status Survey, 1999 (Disability survey) Does any person in the household have a handicap certificate issued by the National Social Services Institute or the respective Autonomous Community body as a result of suffering from a disability, problem or disease? • FIN07 Finland – The National FinRisk, 2002 (HIS/HES) Do you receive disability pension for a disease or inability?

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