ICF in the Australian context

Working Paper No.5

21 November 2005

STATISTICAL COMMISSION and STATISTICAL OFFICE OF THEUN ECONOMIC COMMISSION FOR EUROPEAN COMMUNITIESEUROPE (EUROSTAT)

 CONFERENCE OF EUROPEAN WORLD HEALTHSTATISTICIANS ORGANIZATION (WHO)

Joint UNECE/WHO/Eurostat Meetingon the Measurement of Health Status (Budapest, Hungary, 14-16 November 2005)

 Session 1 – Invited paper

Sally Goodspeed, Australian Bureau of Statistics

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

Community services information governance

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

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

ICF concepts

Functioning and Disability

Body Functions and Structures

Activities and Participation

Contextual Factors

Environmental factors

Personal factors

Qualifiers for Activities and ParticipationPerformance

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)

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'

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

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

Other long-term conditions screen

used a prompt card approach for conditions which testing had suggested could be underreported:

Alzheimer's diseaseanginaarthritisback problemsdementiadiabeteshypertension, andnervous tension/stress

Note: The person also had to be 'restricted in everyday activities' as a consequence

Specific limitation or restrictioncore activity limitationschooling restrictionemployment restriction

Core activity limitationcommunicationmobilityself care

Other limitations or restrictionshealth carepaperworktransporthouseworkproperty maintenancemeal preparationcognition and emotion

Limitations and/or restrictions

Self carebathing or showeringdressingeatingtoilettingbladder/bowel control

Mobilitymoving around at home and away from homeusing public transportgetting in and out of bed or chair

Communicationunderstanding and being understood by family and friendsunderstanding and being understood by strangers

Core activity tasks (survey)

Disability prevalence2003 Survey of Disability, Ageing and Carers

Profound core activity(a) limitation 3%Severe core activity(a) limitation 3.3%Moderate core activity(a) limitation 3.5%Mild core activity(a) limitation 5.3%

Total with core activity(a)limitation 15.2%

Schooling or employment restriction only 1.9%All with specific restrictions 17.1%Without specific restrictions 2.9%

All with disability20%

(a) Core activities comprise communication, mobility and self-care

No Disability2003 Survey of Disability, Ageing and Carers

With long-term health condition 20.9%Without long-term health condition 59.1%All with no disability80%

Total100%

(a) Core activities comprise communication, mobility and self care

Disability modulesimilar screen to the disability survey, but compressed onto prompt cardsno underlying conditions collectedobtains activity limitation and need for assistance in the areas of self-care, mobility, communication and restricted participation in education and employment only

Output data itemsimilar to full survey output data itemitem called "disability and/or long-term health condition" as it includes a broader disability population to that identified in the survey

Disability module

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 disabilitytriggers less effective

Useful for looking at the impact of levels of disability on other life experiencesShows 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)

Census module (2006 approach) Two questions

first asking whether "needs assistance" with any of three listed activities: self-care, mobility, and communicationsecond 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

Proposed Census 2006 question set

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.

Body Function Survey Module Census Body Structures Survey Module Census

1 Mental Functions y y n 1 Structures of the nervous system y y n

2 Sensory functions and pain y y n 2 The eye, ear and related structures

y, indirect n n

3 Voice and speech functions y y n 3 Structures involved in voice and speech

y, indirect n n

4 Functions of the cardiovascular, haematological, immunological and respiratory systems

y y n 4 Structures of the cardiovascular, immunological and respiratory systems

y, indirect n n

5 Functions of the digestive, metabolic and endocrine systems

y n n 5 Structures related to the digestive, metabolic and endocrine systems

y, indirect n n

6 Genitourinary and reproductive functions

with above n n 6 Structures related to the genitourinary and reproductive systems

y, indirect n n

7 Neuromusculoskeletal and movement-related functions

y y n 7 Structures related to movement y, indirect n n

8 Functions of the skin and related structures

indirect n n 8 Skin and related structures y, indirect n n

Y - included in some wayY, indirect - obtained from

condition codingN - not included

Mapping Survey Module and Census to ICFBody Function and Structures

Activities and Participation

Survey Module Census Environmental Factors Survey Module Census

1 Learning and applying knowledge

y y n 1 Products and technology y y n

2 General tasks and demands y y n 2 Natural environment and human-made changes to environment

n n n

3 Communication y y y 3 Support and relationships y y y

4 Mobility y y y 4 Attitudes n n n

5 Self-care y y y 5 Services, systems and policies y n n

6 Domestic life y n n

7 Interpersonal interactions y n n

8 Major life areas y n y

9 Community, social and civic life

y n y

Mapping Survey Module and Census to ICFActivities and Participation and Environmental Factors

More detailed mapping, to sub-domain level

a two way processmatching SDAC questions to ICF codeslooking 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

Example of detailed mapping

Code ICF Category Most relevant SDAC Question(s)

Chapter 1 - PRODUCTS AND TECHNOLOGY

e110 Products or substances for personal consumption

e1100 Food

e1101 Drugs Are/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

e115 Products 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;

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'

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

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

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 areasthese people are not currently output within the population of 'people with a disability', yet they do have a disability in ICF terms

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.