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Joseph and his mother, March 2003 Joseph J. and his mother, January 2004

ICD-10 B24 HIV disease B24 HIV disease

ICF activity limitations performance restriction in: Moving around (d455.44) Washing (d510.33) Education (d830.44)

…

Almost fully functional moderate participation restriction in Higher education (d830.03)

World H ealth O rganization D isability A ssessment Schedule 2.0

Dr T. Bedirhan Üstün Classifications, Terminologies and Standards,

WHO, Geneva

WH ODA S 2.0

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What is WH ODA S 2.0 ?

– A generic assessment instrument for measuring health and disability – in clinical practice – at population level

– captures the level of functioning in six domains of life

1: Cognition understanding and communicating

2: Mobility moving and getting around

3: Self-care hygiene, dressing, eating and staying alone

4: Getting along interacting with other people

5: Life activities domestic responsibilities, leisure, work and school

6: Participation joining in community activities, participating in society

– provides a disability profile and a summary measure • that is reliable • applicable across cultures, in all adult populations

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Why use WH ODA S 2.0 ?

Direct conceptual link to the International Classification of Functioning, Disability and Health (ICF)

Cross-cultural comparability

Good Psychometric Properties

Ease of use and availability

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Disease Status (ICD)

Information about Illness, disorder, injury, trauma

Functional Status (ICF)

Information about functioning @ body level: IMPAIRMENTS @ person level: ACTIVITIES @ societal level: PARTICIPATION impact of person’s ENVIRONMENT (barriers/facilitators)

Quality of Life

Subjective well-being, satisfaction

Where is WH ODA S 2.0 in the context of Health Status information?

WH ODA S 2.0

WHOQoL

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WH ODA S 2.0 Development Centres

Seattle

Lima Ibadan

Santander Luxembourg

London Amsterdam

Hamburg

Ankara Athens

Bangalore

Beijing Tokyo Vienna

Delhi Madras

Santiago

Mexico City Havana

Michigan

New York St. Louis Pitsburg

Moscow

Pnom Peng

Tmisora

Tunisia Lebanon

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WHO DAS CENTRES T. Kugener Austria K. Hourn Cambodia G. Yao China J. Saiz Cuba V. Mavreas Greece S. Murthy India H. Pal India R. Thara India U. Nocentini Italy M. Tazaki Japan E. Karam Lebanon C. Pull Luxembourg H. Hoek Netherlands B. Odejide Nigeria J. Segura Garcia Peru R. Vrasti Romania D. Veltischev Russia J.-L. Vazquez-Barquero Spain N.Glozier UK P. Doyle USA D. Hasin USA

TASK FORCE MEMBERS: M. von Korff USA (HSR TF Chair) C. Pull Luxembourg (AI TF Chair) E. Badley Canada K. Ritchie France D. Wiersma Netherlands M. Prince U.K. R. Kessler USA R. Trotter USA NIH Staff C. Kennedy, G. Norquist, K. Magruder NIMH B. Grant NIAAA R. Battjes & B. Fletcher NIDA WHO STAFF T.B. Ustun , N. Kostansjek S. Chatterji, J. Rehm

WH ODA S 2.0 Development TEAM

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Construction of WH ODA S 2.0

Develop and Structure Item Pool – Input from 300+ health or functioning assessment instruments

Link with ICF Operational Definitions – translate criteria into Questions

Nested Multi-level assessment – Short version: epidemiological surveys & censuses – Medium version: everyday practice – Extended versions: Modules for specific areas, detailed norms

Time frame – Last month Last year Lifetime

Family of Instruments – Structured & semi-structured versions – Self - Clinician - Proxy versions

Scoring WHO-DAS – Constructing Scoring Algorithms – Summary measures

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WH ODA S 2.0 Development History

Phase 1: Cross-cultural Applicability Research – Exploration of Domains, items, wording

Phase 2: Questionnaire Construction & Item Reduction – 300 items ---> SIX DOMAINS - 89 Items (CTT and IRT)

– Cross cultural stability

– Exploration on Screens

– Exploration on INTENSITY (difficulty) and FREQUENCY(time)

Phase 3: Reliability

Phase 4: Health Services Research

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Conceptual equivalence of Disability Assessment

– Language – Norms, Values , beliefs – Classification differences – Context differences

Translatability

Usability

Cross-population comparability

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Structure of WH ODA S 2.0

Full version (36-item) – provides most detail – allows to compute overall and 6 domain specific functioning scores – available as interviewer-, self- and proxy-administered forms – average interview time: 20 min.

Short version (12-item) – useful for brief assessments of overall functioning in surveys or health-outcome studies – allows to compute overall functioning scores – explains 81% of the variance of the 36-item version – available as interviewer-, self- and proxy-administered forms – average interview time: 5 min.

Hybrid Versions (12+24-item) – uses 12 items to screen for problematic domains of functioning. – Based on positive responses to the initial 12 items, respondents may be given up to

24 additional questions. – can only be administered by interview or computer-adaptive testing (CAT)

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WH ODA S 2.0 Questions Short Version (12 item)

In the last 30 days how much difficulty did you have in:

1. Standing for long periods such as 30 minutes? 2. Taking care of your household responsibilities? 3. Learning a new task, for example, learning how to get to a new place? 4. How much of a problem did you have joining in community activities (for

example, festivities, religious or other activities) in the same way as anyone else can?

5. How much have you been emotionally affected by your health problems? 6. Concentrating on doing something for ten minutes? 7. Walking a long distance such as a kilometre [or equivalent]? 8. Washing your whole body? 9. Getting dressed? 10. Dealing with people you do not know? 11. Maintaining a friendship? 12. Your day to day work?

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WH ODA S 2.0 Screen construction A 12 item screen was constructed based on:

5 items on general disability factor: • explains 88% of the variation • sensitivity for general disability >90% • domain-specific cases (> 90%)

Additional 7 items – 2 items per domain allows stem-branch skip

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WH ODA S 2.0 factor structure

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WH ODA S 2.0 reliability: test–retest summary

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WH ODA S 2.0 Domain profile by subgroup

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WH ODA S 2.0 Concurrent Validity Summary

SF QOL LHS FIM1 Cognition -.56 -.482 Mobility -.82/-.59 -.60/-.68 -.70 -.80 3 Self Care -.58/-.76 -.47 -.694 Interpersonal -.54 -.36/-.57 -.62 -.375 Work & Home -.54/-.46 -.516 Participation -.69 -.39

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WH ODA S 2.0 relationship with work disability

WHODAS 2.0 Score

Days with reduced household tasks

Days missed work for half day or more

Cognition .28 .15

Mobility .42 .31

Self Care .48 .40

Interpersonal .33 .28

Work & Household .68 .58

Participation .53 .49 TOTAL

.63

.52

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WH ODA S 2.0 Responsiveness in depressed subjects

0.8

1.07

0.44

0.72

0.74

0.81

1.32

0.23

0 0.2 0.4 0.6 0.8 1 1.2 1.4

Outpatient care(Mexico City)

Outpatient care(Ibadan, Nigeria)

Outpatient care ofelderly (London, UK)

Primary health care(Seattle, USA)

WHODAS 2.0 Comparator

Effect size (mean/SD)

LHS

LHS

SF-36 (MCS)

SF-36 (MCS)

N = 100

N = 60

N = 40

N = 73

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WH O DA S I I Responsiveness in schizophrenia subjects

1.03

1.38

0.65

0.86

0 0.2 0.4 0.6 0.8 1 1.2 1.4

Outpatient care(Cuba)

Outpatient care -newly treated

(Beijing, China)

WHODAS 2.0 Comparator

Effect size (mean/SD)

LHS

SF-12 (MCS)

N = 50

N = 50

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WH ODA S 2.0 Responsiveness in other conditions

1.25

0.77

0.59

1.19

0.58

0.42

0 0.2 0.4 0.6 0.8 1 1.2 1.4

Alcohol dependencerehab. (Romania)

Hip / kneearthoplasty

(London, UK)

Primary care of lowback pain (Seattle,

US)

WHODAS 2.0 Comparator

Effect size (mean/SD)

LHS

SF-12 (PCS)

LHS

N = 80

N = 72

N = 76

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Scoring WH ODA S 2.0

Simple scoring – summing-up of scores assigned to each of the items

– “none” (1), “mild” (2) “moderate” (3), “severe” (4) and “extreme” (5) – no recoding or collapsing of response categories

– comparable within groups

Complex scoring – recoding/collapsing of response categories for each item – summing of recoded item scores within each domain – summing of all six domain scores – converting into a metric 0 to 100 (where 0 = no disability; 100 = full disability)

– comparable across populations “item-response-theory” IRT-based scoring

28 | CLASSIFICATIO N S … BUILDIN G BLO CKS O F H EALTH

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… give me a place to stand and I will move the earth

Can M o d er n I RT Help?

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Population distribution of IRT-based scores for WH ODA S 2.0 – Full version

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Population distribution of IRT-based scores for WH ODA S 2.0 – Short version

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Out of Plato's Cave

Measuring "latent" traits

– Mobility – Seeing – Hearing – Cognition – …

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Mobility Vignettes

Paul: active athlete who runs long distance races of 20 kilometres

Mary: has no problems with moving around or using her hands, arms and legs. She jogs 4 kilometres twice a week

Rob: is able to walk distances of up to 200 metres without any problems but feels breathless after walking one km.

Margaret: feels chest pain and gets breathless after walking distances of up to 200 metres, but is able to do so without assistance. Bending and lifting objects such as groceries produces pain.

Louis: is able to move his arms and legs, but requires assistance in standing up from a chair or walking around the house. Any bending is painful and lifting is impossible.

David: paralysed from the neck down; is confined to bed and must be fed and bathed by somebody else

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Calibration Tests

Mobility: variation of standard PosturoLocomotor Test.

Vision: a standard vision chart (Snellen)

Cognition:.

– simple memory: 10 objects given, immediate recall & 20mn recall

– cancellation test: a combined test of attention, task execution

– fluency: naming as many as animals in 1 minute.

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Applications of WH ODA S 2.0 : Population surveys

Multi-country studies/applications – WHO Multi Country Survey Study (MCSS) – World Mental Health Survey (WMHS) – Global Study on Aging (SAGE) – Tsunami Recovery Impact Assessment and Monitoring System (TRIAMS)

– WHO/UNESCAP project on disability statistics

Country studies – Ireland’s National Physical and Sensory Disability Database (NPSDD) – National Health Performance Assessment Survey (Mexico) – First National Study on Disability (Chile) – US VA Twin Registry

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Clinical applications of WH ODA S 2.0

Disease specific validation studies / health outcome assessment – inflammatory arthritis – stroke – systemic sclerosis – anxiety disorders – hearing loss – psychotic disorders – schizophrenia – HIV/AIDS – depression – low back pain – ankylosing spondylitis – Injuries – …

Setting specific validation studies / health outcome assessment – General practitioners – Clinical rehabilitation – Community based care for the elderly – …

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WH ODA S 2.0 Domain 1: Cognition

1. Concentrating on doing something

2. Remembering to do important things

3. Analyzing and finding solutions to problems in day to day life

4. Learning a new task, for example, learning how to get to a new place

5. Generally understanding what people say

6. Starting and maintaining a conversation

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WH ODA S 2.0 Domain 2: Mobility

1. Standing for long periods such as 30 minutes

2. Standing up from sitting down

3. Moving around inside your home

4. Getting out of your home

5. Walking a long distance such as a kilometre (or equivalent)

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WH ODA S 2.0 Domain 3: Self care

1. Washing your whole body

2. Getting dressed

3. Eating

4. Staying by yourself for a few days

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WH ODA S 2.0 Domain 4: Getting along with people

1. Dealing with people you do not know

2. Maintaining a friendship

3. Getting along with people who are close to you

4. Making new friends

5. Sexual activities

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WH ODA S 2.0 Domain 5: Life activities

1. Taking care of your household responsibilities

2. Doing most important household tasks well

3. Getting all the household work done

4. Getting your household work done as quickly as needed

5. Your day to day work

6. Doing your most important tasks well

7. Getting all the work done that you need to do

8. Getting your work done as quickly as needed

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WH ODA S 2.0 Domain 6: Participation in society

1. Joining in community activities

2. Barriers or hindrances in the world around you

3. Living with dignity because of the attitudes and actions of others

4. Time spent on health condition

5. Been emotionally affected by your health condition

6. Impact on the financial resources of you or your family

7. Problem to the family

8. Relaxation or pleasure

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WH ODA S 2.0 Probes

• EACH ITEM: • extent of difficulty

• Optional probes ( tested during development phase)

• number of days

• for positive items

• assistance used: device or personal help • avertability (interventions: self - environment)

• Positive functioning

• Overall Functioning (domain - total)

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WH ODA S 2.0 Next Steps

Development of additional modules – Impairments: 17 Questions from WHS – Environmental factors

Computer Adaptive Testing

Construction of different versions: – Clinician (SCAN-like) version – Children and Youth version

Link WHODAS 2.0 scores to disability weights in DALYs

Enhance Population norms (overall & domain specific)

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WH ODA S 2.0 Next Steps

Comparability research – Item Response Theory Applications – Inclusion of Vignettes – Measured Tests

Health Services Research applications – Outcome – Cost – Need – Utilization – Course

A new way to build the

ICD

ICD11 αlpha http://www.who.int/classifications/icd/revision

Alpha – Browser & Print 10 look & feel + descriptions – code structure !

• ICD-11 alpha draft is INCOMPLETE • updated on a daily basis • NOT TO BE USED for CODING at this stage • not yet been approved by the TAGs, RSG or WHO

ICD-11 Features

Internet Based Platform

Content Model

Multi Lingual Representations

Definitions

Input from all Stakeholders

Arabic لعربية 官话 Chinese English English Français French Русский язык Russian Español Spanish Deutsch German Português Portuguese

Field Trials for Use Cases

Electronic Health Record Ready

THE CONTENT MODEL Any Category in ICD is represented by:

1. ICD Concept Title 1.1. Fully Specified Name 2. Classification Properties 2.1. Parents 2.2 Type 2.3. Use and Linearization(s) 3. Textual Definition(s) 4. Terms 4.1. Base Index Terms 4.2. Inclusion Terms 4.3. Exclusions 5. Body Structure Description 5.1. Body System(s) 5.2. Body Part(s) [Anatomical Site(s)] 5.3. Morphological Properties 6. Manifestation Properties 6.1. Signs & Symptoms 6.2. Investigation findings

7. Causal Properties 7.1. Etiology Type 7.2. Causal Properties - Agents 7.3. Causal Properties - Causal Mechanisms 7.4. Genomic Linkages 7.5. Risk Factors

8. Temporal Properties 8.1. Age of Occurrence & Occurrence Frequency 8.2. Development Course/Stage

9. Severity of Subtypes Properties 10. Functioning Properties 10.1. Impact on Activities and Participation 10.2. Contextual factors 10.3. Body functions 11. Specific Condition Properties 11.1 Biological Sex 11.2. Life-Cycle Properties

12.Treatment Properties 13. Diagnostic Criteria

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Ontology (philosophy) – the Organization of Reality !!!

Ontology (computer science) – the explicit – operational description

of the conceptualization of a domain: Concepts: entity and quality

(properties and attributes)

An ontology defines: – a common vocabulary a shared

understanding/exchange: among people among software agents between people and software

Wh a t i s O n t o l o g y ?

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Operationalization of Diagnosis

ICD A Specific phenomenology

B Signs and Symptoms

C ….

D Exclusion rules

DSM A Specific phenomenology

B Signs and Symptoms

C DISABILITY & DISTRESS

D Exclusion rules

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Separate Classification of Disease and Disability

+ = case

Diagnosis Disability = case

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Public Health, Epi & Surveillance

Findings Interventions Events

Re a l Ti m e P u b l i c H e a l t h Rule-based Aggregation @ Individual, Facility, Population levels

Clinical Information

Reimbursement Resource Management

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Mental Health and Rest of Medicine

• Parity – Common Information Model

– Disease definition: • Dimensions – Categories - Thresholds

– Formulation of Disability

– Use in electronic health records

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