Capturing the Lived Experience -WHO’s International Classification of

Functioning, Disability and Health

Melissa SelbICF Research Branch Coordinator

This talk will…

• briefly introduce the ICF

• show real-life examples of ICF application

• informed you about the role of the ICF in the ICD-11 revision process

• give you insight into future developments related to the ICF

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ICF Research Branch

Jerome Bickenbach

Judith HollenwegerAlarcos Cieza

Gerold Stucki

Cooperation partner within the WHO Family of International Classifications (WHO-FIC)

Collaborating Centre in Germany (at DIMDI)

Melissa Selb

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Bio-psycho-social model of functioning and disability

Grandma Smith is living with rheumatoid arthritis

Def.: Rheumatoid arthritis:

“Rheumatoid arthritis (RA) is a chronic, systematic inflammatory disorder that may affect many tissues and organs, but principally attacks the joints producing an inflammatory synovitis that often progresses to destruction of the articular cartilage and ankylosis of the joints.”

The lived experience

Grandma Smith is living with rheumatoid arthritis

However:What are Grandma Smith’s problems and needs in relation to her experience living with rheumatoid arthritis ?

The lived experience

(ICD: M05)

Bio-psycho-social model of functioning and disability

Inflammatory polyarthropathies(M05-M14) M05 Seropositive rheumatoid arthritisExcludes: rheumatic fever ( I00 )

rheumatoid arthritis (of): · juvenile ( M08.- ) · spine ( M45 ) M05.0 Felty's syndrome

Rheumatoid arthritis with splenoadenomegalyand

leukopeniaM05.1+ Rheumatoid lung disease ( J99.0* ) M05.2 Rheumatoid vasculitisM05.3+ Rheumatoid arthritis with involvement of other organs and systems

Rheumatoid: · carditis ( I52.8* ) · endocarditis ( I39.-* ) · myocarditis ( I41.8* ) · myopathy ( G73.7* ) · pericarditis ( I32.8* ) · polyneuropathy ( G63.6* )

M05.8 Other seropositive rheumatoid arthritisM05.9 Seropositive rheumatoid arthritis, unspecified

Diagnosis is not enough…

Same health condition, Different experiences

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Functioning and disability is reflected in terms of…

Body Structures

Activities

Participation

Joints

Manipulating objects

Taking care of others

Body FunctionsMobility and stability of joints

…in interaction with the environment

Pain medicationHealth servicesSupport and relationships

Bio-psycho-social model of functioning and disability

Multi-dimensional approach to describe human functioning and disability and is a framework to organize information on the lived experience of a person with health condition.

Health condition

Environmental factors Personal factors

Body functions/ Body structures

Activities Participation

Bio-psycho-social model of functioning and disability

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Body functions and structures

Activities & ParticipationFunctioning

Bio-psycho-social model of functioning and disability

ImpairedBody functions and structures

LimitedActivities

& RestrictedParticipation

Disability

Bio-psycho-social model of functioning and disability

ICF moves away from seeing disability as soley a consequence of disease

Disability = Consequences of disease

Health condition

Medical model

Health condition

Environmental factors Personal factors

Body functions/ Body structures

Activities Participation

Bio-Psycho-Social model of the ICF

to a result of the dynamic interaction between components of health

Bio-psycho-social model of functioning and disability

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ImpairedBody functions and structures

LimitedActivities

& RestrictedParticipation

Person‘sexperience of disability in

relation to thebody

Person‘sexperience of disability in

relation to theenvironment

Bio-psycho-social model of functioning and disability

Medication

Joint pain

Health condition

Environmental factors

Personal factors

Body functions/ Body structures Activities Participation

There is a dynamic interaction between the entities: Changes in one entity have the potential to modify one or more of the other entities.

Rheumatoid arthritis, ICD M05

Buttoning coat; Taking care of granddaughter

Bio-psycho-social model of functioning and disability

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Health condition

Environmental factors Personal factors

Body functions/ Body structures

Activities Participation

493 384

253

310

0

1424 ICF categories are grouped into the components

No personal actors yet!

classified within ICD

Body functions

Body structures

Activites & participation

Environmental factors

The structure and codes of the ICF

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Health condition

Environmental factors Personal factors

Body functions/ Body structures

Activities Participation

1685 categories

• Derived from the ICF• Designed to describe the characteristics of the developing

child and influence of his/her environment.

ICF - Children and Youth Version

Children &YouthVersion

261 categories more than the ICF

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• Same organisation and structure as the ICF

• Includes all the codes of the ICF

• Modified descriptions

• New codes

• Modified inclusion and exclusion criteria

• Expanded rating scale (qualifiers) to indicate that impairments may take form of delays or lags in emergence of functions, activities/participation

Children &YouthVersion

WHO, 2007

ICF - Children and Youth Version

Kostanjsek N. Use of The International Classification of Functioning, Disability and Health (ICF) as a conceptual framework and common language for disability statistics and health information systems. BMC Public Health. 2011; 11(Suppl 4): S3.

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Assigned new contentb1470 Psychomotor controlb1471 Quality of psychomotor functionsb1472 Organization of psychomotor functions

b1473 Manual dominanceDevelopment and preference in hand use.b1474 Lateral dominanceDevelopment and preference of eye, and limb use.

Examples differences ICF and ICF-CY

Modified and expanded descriptionsb147 Psychomotor functionsSpecific mental functions of control over both motor and psychologicalevents at the body level.

Modified and expanded descriptionsb147 Psychomotor functionsMental functions that regulate the speed of behaviour or response timethat involves both motor and psychological components, such as indisruption of control producing psychomotor retardation (moving andspeaking slowly; decrease in gesturing and spontaneity) or psychomotorexcitement (excessive behavioural and cognitive activity, usuallynonproductive and often in response to inner tension as in toe-tapping,hand-wringing, agitation, or restlessness.)

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Modified inclusion and exclusion criteriab147 Psychomotor functionsInclusions: functions of psychomotor control, such as psychomotorretardation, excitement and agitation, posturing, catatonia, negativism,ambitendency, echopraxia and echolalia; quality of psychomotor functionExclusions: consciousness functions (b110); orientation functions (b114);intellectual functions (b117); energy and drive functions (b130); attentionfunctions (b140); mental functions of language (b167); mental functionsof sequencing complex movements (b176)

Examples differences ICF and ICF-CY

Expanding qualifiers Added “During childhood and adolescence, impairments may also take the form of delays or lags in the emergence of body functions during development”.

Modified inclusion and exclusion criteriab147 Psychomotor functionsInclusions: manual and lateral dominance functions of psychomotor control, suchas in psychomotor delay, excitement and agitation, posturing, stereotypes, motor perseveration, catatonia, negativism, ambitendency, echopraxia and echolalia; quality of psychomotor function.Exclusions: consciousness functions (b110); orientation functions (b114); intellectual functions (b117); energy and drive functions (b130); attention functions (b140); basic cognitive functions (b163); mental functions of language (b167); clumsiness (b760)

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Merger ICF and ICF-CY

WHO plans to merge the ICF and ICF-CY further enhancing the ICF’s relevance for the population at ALL ages

No date set yet

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The different health professionals speak their own language in relation to

Functioning

Actual situation ….

Development of ICF Core Sets

Ψ diagnosisΨ Interventions

Ψdocumentation

__________

__________

__________

Physician‘ diagnosis Physician Interventions

Physician documentation

____________

____________

____________

Nurses‘ diagnosisNursing Interventions

Nursing documentation

___________

___________

___________

OT diagnosis OT Interventions

OTdocumentation

____________

____________

____________

PT diagnosisPT Interventions

PTdocumentation

____________

____________

____________

Patient

Development of ICF Core Sets

Actual situation ….

Ψ diagnosisΨ Interventions

Ψdocumentation

__________

__________

__________

Physician‘ diagnosis Physician Interventions

Physician documentation

____________

____________

____________

Nurses‘ diagnosisNursing Interventions

Nursing documentation

___________

___________

___________

OT diagnosis OT Interventions

OTdocumentation

____________

____________

____________

PT diagnosisPT Interventions

PTdocumentation

____________

____________

____________

Patient

Development of ICF Core Sets

Aim and vision….

ICF__________

__________

__________

ICD-10

Health Condition(disease, trauma)

Environmental Factors

Personal Factors

ActivitiesBody FunctionsBody Structures Participation

Introduction to the ICF

493310

384

253

Over 1400 ICF categories

Development of ICF Core Sets

Development of ICF Core SetsICF Research Branch in cooperation with the

WHO-FIC Collaborating Centre in Germany (at DIMDI) Swiss Paraplegic Research

Ludwig-Maximilians-University

WHOClassifications, Terminology and Standards Team

Partner-Organizations

Development of ICF Core Sets

Development of ICF Core Sets

Development of ICF Core Sets

s110s120s130s430s510s710… b110b114b117b130b152b144b730...d110d240d410d415d520d630d920…e110e115e120e125e130e150…

s110s430s710b110b130b152b730d240d410d415d920e110e120e130

Health condition-, setting- and situation-specific, Minimal Generic Set

ComprehensiveICF Core Sets

Brief ICF Core Sets

Over 1400 categories

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Health sector

• Settings in which a comprehensive multidisciplinary description and assessment of functioning is necessary (e.g. rehabilitation)

Comprehensive ICF Core Set for a specific health condition or setting or situation

Brief ICF Core Set for a specific health condition or setting or situation

• Settings in which a brief description and assessment of functioning issufficient (e.g. primary care)

• clinical & epidemiological studies / research

• reporting of disability and other variables of functioning; population studies

Development of ICF Core Sets

b152 Emotional functionsb265 Touch functionb270 Sensory functions related to temperature and other stimulib280 Sensation of painb710 Mobility of joint functionsb715 Stability of joint functionsb730 Muscle power functionsb760 Control of voluntary movement functionsb810 Protective functions of the skinb740 Muscle endurance functionsb780 Sensations related to muscles and movement functionsb820 Repair functions of the skinb860 Function of nails

ComprehensiveICF Core Set

Hand conditions (Excerpt) – Body Functions

Brief ICF Core Set

Development of ICF Core Sets

d230 Carrying out daily routine d430 Lifting and carrying objects d440 Fine hand use d445 Hand and arm use d5 Self-care d6 Domestic life d7 Interpersonal interactions and relationships d840 - d859 Work and employmentd170 Writingd360 Using communication devices and techniquesd4400 Picking upd4401 Graspingd4403 Releasingd4408 Fine hand use, other specified

Development of ICF Core Sets

Hand conditions (Excerpt) – Activities and Participation

Brief ICF Core Set

ComprehensiveICF Core Set

Acute inflammatory arthritis Ankylosing spondylitis Low back pain Obstructive pulmonary diseases Osteoarthritis Osteoporosis Rheumatoid arthritis Chronic widespread pain Breast cancer Head and neck cancer Depression Bipolar disorders Chronic ischemic heart disease Diabetes Obesity Stroke Hand conditions Multiple sclerosis Traumatic brain injury

Available ICF Core Sets

Development of ICF Core Sets

Spinal cord injury in post-acuteand long-term care

Sleep disorders Inflammatory bowel diseases Hearing Loss Vertigo Children/youth with Cerebral Palsy Cardiopulmonary, muskuloskeletal

and neurological conditions in acute and post-acute setting including for geriatrics

Vocational rehabilitation

Current developmentsLower limb amputees, Autism spectrum, Attention Deficit Hyperactivity Disorder (ADHD), Schizophrenia

Where to find existing ICF Core Sets

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Generic Set and Disability Set

ICF Generic Set (N=7) Mobility d450 Walking

d455 Moving around Pain and Discomfort b280 Sensation of pain Sleep and Energy b130 Energy and drive functions Affect b152 Emotional functions

d230 Carrying out daily routine d850 Remunerative employment

Disability Set - the Generic Set to be added (N=15) Mobility b455 Exercise tolerance functions

b710 Mobility of joint functions b730 Muscle power functions d470 Using transportation

Self Care d510 Washing oneself d540 Dressing d570 Looking after one’s health

Interpersonal Activities d710 Basic interpersonal interactions d920 Recreation and leisure

Sleep and Energy b134 Sleep functions

b640 Sexual functions d770 Intimate relationships d240 Handling stress and other psychological demands d640 Doing housework d660 Assisting others

Should always be used when applying other ICF Core Sets !

Environmental Factors – can be added to Disability Set (N=10) e110 Products or substances for personal consumption e120 Products and technology for personal indoor and outdoor mobility and transportation e135 Products and technology for employment e150 Design, construction and building products and technology of buildings for public use e155 Design, construction and building products and technology of buildings for private use e225 Climate e310 Immediate family e320 Friends e450 Individual attitudes of health professionals e580 Health services, systems and policies

Environmental Factors for Disability Set

www.icf-core-sets.org

Real-life application of the ICF

Melissa SelbICF Research Branch Coordinator

VIRK Vocational Rehabilitation Fund

The ICF domains

Smári PálssonMargrét Theoodórsdóttir

Main features in the work of ability assessment

Re-assessmentSpecial AssessmentBasic Assessment

ICF in Finland - HUS

Outpatient Clinic for Spinal Cord Injury, Helsinki University Central Hospital (HUS)

• Started in August 2013

• Assessment Sheets similar to Rehab Basel concept based on a modified version of the Brief ICF Core Set for Spinal Cord Injury

• Useful for patient discussion and inter-professional work

• Positive resonance from patient and health professional

• Takes 20-30 min. (1st outpatient visit)

• Plan to put in electronic records format

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ICF in Finland - HUS

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ICF in Finland - HUS

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Assessing functioning status and working capability

VAT Valmennuksen arvioinnin tuki

Tool for describing (defining) the goals and effects of work counselling or assessing working capacity

C: Tuomas Leinonen

Aims of VAT

• Describe the strengths and disabilities of the customersfunctioning status / working capability in a familiar working environment

• Facilitate the decision-making of multidisciplinary teams

• Provide support for feedback discussions between customers and rehabilitation staff

• Helps to optimize rehabilitation interventions

• Provide evidence on the impact of rehabilitation

C: Tuomas Leinonen

More information on the VAT system, and its practical applications can be acquired from:

Tuomas Leinonentuomas.leinonen@kumppaniksi.fi

+35850 5210 964http://www.kumppaniksi.fi/load/VATinfoE.pdf

ICF in the ICD-11 Revision processFunctioning properties are part of the ICD content model used as the framework for the 11th revision of the ICD. Functioning properties is a set of ICF categories that describe functioning associated with ICD disease entities.

Diagnosis + Functioning a broader and more meaningful picture of the health of persons and populations can be used for a range of decision-making purposes

ICD-11 Revision

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ICD-11 Beta Browser

http://apps.who.int/classifications/icd11/browse/f/en

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Functioning Topic Advisory Group (fTAG)

Purpose: To support WHO in the linking of ICD and ICF in the context of the development of ICD-11.

Tasks:

•Populate functioning properties (FP)

•Identify mirror coding i.e. the conceptual and terminological overlaps between disease entities in the ICD-11 with the ICF

•Develop use cases for ICD-ICF joint use

•Exploring possible structural and content revisions to the Z-codes

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ICD-11 Revision

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Publications

Assessing the impact of musculoskeletal health conditions using the ICF.

Kostanjsek N, Escorpizo R, Boonen A, Walsh N, Üstün TB, Stucki G. Disability and Rehabilitation. 2011; 33(13–14): 1281–1297.

Assessing the impact of health conditions using the ICF.

Kostanjsek N, Rubinelli S, Escorpizo R, Cieza A, Kennedy C, Selb M, Stucki G, Üstün TB. Disability and Rehabilitation. 2011; 33(15-16): 1475-1482.

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Publications

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Rehab.-relevant Health Conditions

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Guidance Document

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Thank you for your attention!

QUESTIONS?