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

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 ISTAT

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

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

Table 1 Breakdown by survey type ISTAT Survey TypeNumberCode Survey HIS13A01, B02, CH02, DK02, E02, EL02, F09, F1999, FIN06, I01, IS02, NL02, H01 General Social Survey*10B03, D02, F12, I04, IRL04, IS03, L02, N01, S02, UK11 Census6Bc02, EL01, IrlC02, P04, UK15, H02 HIS/HES3FIN03, IRL03, NL03 Disability2F02 Other3UK02, H03, H04 Total 36 * Including Multipurpose Surveys and Standard of Living Surveys Total Surveys: 36

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 ISTAT

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

Table 2 Distribution of surveys by the number of questions used to identify people with disabilities ISTAT Number of questions Survey codeNumber of surveys % of total 1 CH02, D02, E02, EL01, EL02, F02, F12, F1999, FIN03, I01, I04, IRL03, NL02, S02, UK15, H02, H ,1 2 A01, B02, B03, Bc02, DK02, F09, FIN06, IRL04, L02, P04, UK02, UK11, H ,1 3 IS03 – H04 25, NL03 12,8 6 IrlC02 - N01 25,6 7 IS02 12,8 Total Number 36100

Table 3 Distribution of surveys by question(s) used as general measure and survey type ISTAT Number of questions His General Social Survey Census HIS / HESDisability Other Number of surveys TOTAL Types of survey

ISTAT Number of questions BS BF ABS BF A P BS BFBS BF PA Total TOTAL I. C. F. DOMAINS Table 4 I.C.F. Domain addressed by the general measure(s)

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 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 ISTAT

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. 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. 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 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). 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”). ISTAT

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

MEHM Minimum European Health Module ISTAT 1.How is your health in general? Very good/ good/ fair/ bad/ very bad 2.Do you have any long-standing illness or health problem? Yes / No 3.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.

MEHM (1) Self Perceived Health ISTAT 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.

MEHM (1) Self Perceived Health ISTAT 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.

MEHM (2) Chronic Morbidity ISTAT 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 referenceNot 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”.

MEHM (2) Chronic Morbidity ISTAT 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

MEHM (3) Activity Limitations (GALI) ISTAT 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

MEHM (3) Activity Limitations ISTAT 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.

MEHM (3) Activity Limitations ISTAT 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”

MEHM: Main Results ISTAT 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. Total surveys: 53

MEHM: Main Results ISTAT 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. Total surveys: 53

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? 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? ISTAT