1. ICF in the Australian context Working Paper No.5 21 November 2005 STATISTICAL COMMISSION andSTATISTICAL OFFICE OF THE UN ECONOMIC COMMISSION FOREUROPEAN COMMUNITIES EUROPE (EUROSTAT) CONFERENCE OF EUROPEAN WORLD HEALTH STATISTICIANS ORGANIZATION (WHO) Joint UNECE/WHO/Eurostat Meeting on the Measurement of Health Status (Budapest, Hungary, 14-16 November 2005) Session 1 – Invited paper Sally Goodspeed, Australian Bureau of Statistics

2. Health information governance  Australian Bureau of Statistics (ABS)  collects national health and disability statistics  national vital statistics collections - incl births and deaths  Australian Institute of Health and Welfare (AIHW)  coordinates national minimum datasets from States and Territories  manages metadata repositories  collaborating centre for WHO Family of Classifications

3. Community services information governance

4. ABS health surveys  Australian Health Survey pre 1989/90  National Health Survey 1989/90  National Health Survey 1995  National Nutrition Survey 1995  Survey of Mental Health and Well-being 1997  National Health Survey 2001  National Health Survey 2004/05

5. ABS disability surveys.....  Survey of Handicapped Persons 1981  Survey of Disabled and Aged Persons 1988  Survey of Disability, Ageing and Carers 1993  Survey of Disability, Ageing and Carers 1998  Survey of Disability, Ageing and Carers 2003

6. ICF concepts  Functioning and Disability  Body Functions and Structures  Activities and Participation  Contextual Factors  Environmental factors  Personal factors

7. Qualifiers for Activities and Participation  Performance  Describes what an individual does in his or her current environment  Capacity  Highest probable level of functioning that a person may reach  To assess need a concept of a standardised environment (difficult in a survey environment)

8. Measuring functioning in Australia  Survey of Disability Ageing and Carers (average 44 mins)  Shorter survey module (average < 2 mins)  Census 'core activity - need for assistance'

9.  Initial screening questions, using impairment of body function, some activity limitations and participation restrictions, and environmental factors  Separate responses obtained for each impairment/activity limitation/participation restriction/environmental factor  Identify underlying cause in terms of ICD for each impairment/activity/environment area questioned  Includes a range of activity limitation/participation restriction and environmental factors  Need for assistance, difficulty with activities and use of aids is used to derive level of severity of restriction  Specific limitations/restrictions covered are: mobility, self-care, communication, and employment and school restrictions Survey approach

10.  loss of sight  loss of hearing  speech difficulties  breathing difficulties*  chronic pain*  blackouts, fits  difficulty learning or understanding  incomplete use of arms or fingers  difficulty gripping  incomplete use of feet or legs  nervous or emotional condition*  restricted in physical activities/work  disfigurement/deformity  mental illness, need for assistance  head injury, stroke, other brain damage*  other long-term conditions* Survey disability screening items

11. Other long-term conditions screen used a prompt card approach for conditions which testing had suggested could be underreported:  Alzheimer's disease  angina  arthritis  back problems  dementia  diabetes  hypertension, and  nervous tension/stress Note: The person also had to be 'restricted in everyday activities' as a consequence

12.  Specific limitation or restriction  core activity limitation  schooling restriction  employment restriction  Core activity limitation  communication  mobility  self care  Other limitations or restrictions  health care  paperwork  transport  housework  property maintenance  meal preparation  cognition and emotion Limitations and/or restrictions

13.  Self care  bathing or showering  dressing  eating  toiletting  bladder/bowel control  Mobility  moving around at home and away from home  using public transport  getting in and out of bed or chair  Communication  understanding and being understood by family and friends  understanding and being understood by strangers Core activity tasks (survey)

14. Disability prevalence 2003 Survey of Disability, Ageing and Carers Profound core activity(a) limitation3% Severe core activity(a) limitation3.3% Moderate core activity(a) limitation3.5% Mild core activity(a) limitation5.3% Total with core activity(a)limitation 15.2% Schooling or employment restriction only1.9% All with specific restrictions17.1% Without specific restrictions2.9% All with disability 20% (a) Core activities comprise communication, mobility and self-care

15. No Disability 2003 Survey of Disability, Ageing and Carers With long-term health condition20.9% Without long-term health condition59.1% All with no disability 80% Total 100% (a) Core activities comprise communication, mobility and self care

16.  Disability module  similar screen to the disability survey, but compressed onto prompt cards  no underlying conditions collected  obtains activity limitation and need for assistance in the areas of self-care, mobility, communication and restricted participation in education and employment only  Output data item  similar to full survey output data item  item called "disability and/or long-term health condition" as it includes a broader disability population to that identified in the survey Disability module

17. Results from a disability module used in three other surveys have been compared with each other, and with the disability survey. Conclusions are:  Module results cannot be used to update prevalence  Disability population broader than in disability surveys,  filters less effective, more people with long-term health conditions captured  Smaller population with more severe disability  triggers less effective  Useful for looking at the impact of levels of disability on other life experiences  Shows clear distinction between no disability, broad disability and severe/profound limitation population groups  Reasonably good comparability between the disability survey and different surveys using the module Disability module (continued)

18. Census module (2006 approach)  Two questions  first asking whether "needs assistance" with any of three listed activities: self-care, mobility, and communication  second asking cause of difficulty, with responses of 'long-term health condition', 'disability' and 'old age' comprising the 'core activity limitation' population  Also tested: restriction/limitation at work or school, home, or social and community life A disability related census question

19. Proposed Census 2006 question set

20. Mapping the ABS disability survey and module to the ICF  The ABS and the AIHW have jointly mapped a number of disability surveys/questions to the ICF  The mapping is useful to identify dimensions and domains covered in screening questions in the survey  However, it is a summary measure only, and does not give the full picture of the approach to the measurement of disability  Some domains and dimensions are covered in much greater details than others.

21. Body FunctionSurveyModuleCensusBody StructuresSurveyModuleCensus 1 Mental Functionsyyn1 Structures of the nervous systemyyn 2 Sensory functions and painyyn2 The eye, ear and related structuresy, indirectnn 3 Voice and speech functionsyyn3 Structures involved in voice and speech y, indirectnn 4 Functions of the cardiovascular, haematological, immunological and respiratory systems yyn4 Structures of the cardiovascular, immunological and respiratory systems y, indirectnn 5 Functions of the digestive, metabolic and endocrine systems ynn5 Structures related to the digestive, metabolic and endocrine systems y, indirectnn 6 Genitourinary and reproductive functions with abovenn6 Structures related to the genitourinary and reproductive systems y, indirectnn 7 Neuromusculoskeletal and movement-related functions yyn7 Structures related to movement y, indirectnn 8 Functions of the skin and related structures indirectnn 8 Skin and related structuresy, indirectnn Y - included in some way Y, indirect - obtained from condition coding N - not included Mapping Survey Module and Census to ICF Body Function and Structures

22. Activities and ParticipationSurveyModuleCensusEnvironmental FactorsSurveyModuleCensus 1 Learning and applying knowledge yyn1 Products and technologyyyn 2 General tasks and demandsyyn2 Natural environment and human- made changes to environment nnn 3 Communicationyyy3 Support and relationshipsyyy 4 Mobilityyyy4 Attitudesnnn 5 Self-careyyy5 Services, systems and policiesynn 6 Domestic lifeynn 7 Interpersonal interactionsynn 8 Major life areasyny 9 Community, social and civic lifeyny Mapping Survey Module and Census to ICF Activities and Participation and Environmental Factors

23. More detailed mapping, to sub- domain level  a two way process  matching SDAC questions to ICF codes  looking for questions that related to ICF codes  most questions were able to be assigned to ICF codes  generally clear whether there was a question which could be related to a specific ICF code  questions on 'difficulty with a task', 'need for assistance' and 'use of assistive devices' enabled the addition of qualifier codes

24. Example of detailed mapping CodeICF CategoryMost relevant SDAC Question(s) Chapter 1 - PRODUCTS AND TECHNOLOGY e110Products or substances for personal consumption e1100 Food e1101 DrugsAre/is you/anyone in the household receiving treatment or medication for any other long-term conditions or ailments? e1108 Products or substances for personal consumption, other specified e1109 Products or substances for personal consumption, unspecified e115Products and technology for personal use in daily living e1150 General products and technology for personal use in daily living e1151 Assistive products and technology for personal use in daily living Do/does you/he/she use an aid to help with any of these tasks: - showering/bathing; - toiletting; - managing incontinence; - dressing; - eating; - meal preparation;

25. Relatability issues  not all questions were precise enough to allocate a specific code below domain level  e.g. 'does anyone in the household have anything wrong with their speech?' could be applicable to any of 'voice functions', 'articulation functions', etc  multiple concepts contained in a single question limited coding without extensive explanation and cross referencing  e.g....treatment or medication for any long-term condition or ailment? - Health professionals (e355) or medication (e110)?  danger of causal assumptions:  e.g 'loss of hearing', coded to ICF b230 (hearing), not able to be coded to any body structure code. e.g could be due to 'impairment of nervous system'

26. Extent of coverage  Good coverage at domain level, except:  domains within the 'body structure' component  'domestic life', 'particular personal relationships', 'religion and spirituality' and 'political life and citizenship' within the activities and participation component, and  the environmental factors domains of 'attitudes' and 'natural environment'  It is important to note that coverage at the component or domain level does not imply comprehensive coverage at sub-levels

27. Issues to be resolved  where ICF categories are combined, need to consider whether to split in future collections  would need to evaluate and assess the impact on existing collections if an international approach is agreed (Washington group, this group, others)  would need to be in consultation with major users of the data

28. Issues to be resolved (continued)  for people aged 60 years and over, questions were asked about a range of IADL activity/participation areas irrespective of their survey derived 'disability' status.  some 12% in 1998 identified a need for assistance or a difficulty in one or more of these areas  these people are not currently output within the population of 'people with a disability', yet they do have a disability in ICF terms

29. Conclusion  the ICF provides a valuable framework for all aspects of disability data collection and analysis  the mapping process has:  increased awareness of content and relatability of survey and other approaches  identified data gaps which might inform future survey reviews The ABS supports the use of the ICF framework for harmonising the collection and dissemination of data relating to people with a disability, both nationally and internationally.