What is disability? Part of human condition Complex, - - PDF document

Applying the ICF in disability evaluation in adults: Implications to children and youth rehabilitation

• Dr. Reuben Escorpizo

Assistant Professor Louisiana State University, New Orleans USA Research Scientist ICF Research Branch of the WHO Swiss Paraplegic Research, Nottwil, Switzerland

• Dr. Margaret Chan, WHO

Robert B. Zoellick, World Bank

Our driving vision is of an inclusive world in which we are all able to live a life of health, comfort, and dignity.

Disability and Rehabilitation across the lifespan

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• Part of human condition
• What is disability?
• Complex, multidimensional, dynamic
• Shift from medical model to

biopsychosocial model

• Results from the interaction between

persons with impairments and

What is disability?

persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others

World Health Organization 2011

• Umbrella term for impairments, activity

limitation, and participation restrictions

• What is disability?
• Negative aspects of the interaction

between a person with a health condition and that person’s contextual factors (environment and personal factors)

World Health Organization 2001

Demographics of Disability

• Estimates of disability in children

depend on the definition and measure

• f disability
• 0-14 yrs old with moderate-severe

disability (93 million, 5.1%), severe disability (13 million, 0.7%) (GBD 2004)

• Varying prevalence 0.4 to 12.7%

(maybe due to that children do not get services and are not identified)

World Health Organization 2011

ICF-Children & Youth

• International Classification of

Functioning, Disability and Health

• World Health Organization 2001
• World Health Organization 2001
• Conceptual framework and

classification system

• Impact of health condition on

functioning (disability) Health Condition Body Functions Body Structure Activity Participation Body Structure Environment Person Cerebral Palsy

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Disability and Environment

• Environment

influences the experience and extent

• f disability
• Inaccessible

environment impeded participation and inclusion

• E.g. Lack of sign

language intepreter, no ramp or elevator for wheelchair user

World Health Organization 2011

Disability and Environment

• Also includes policies

and service delivery systems systems

• Attitude of others
• Support and

relationship with

• thers

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Disability and Development

• Disability is a development issue
• Impacts socioeconomics and impact on

education and work / employment education and work / employment

• Children with disabilities are less likely

to attend school

• Households with children with

disabilities are likely to experience hardship (water, housing, sanitation, food, and healthcare)

Evaluating Disability

• A challenge because disability is

complex, multidimensional, and dynamic dynamic

• Different definitions, question design,

reporting sources, data collection method, and expectations of functioning

• Need to evaluate the ICF components

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Same health condition Different environment Different levels of participation = Different levels of Disability

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Same health condition Different personal factors Different levels of participation = Different levels of Disability

Evaluating Disability

• Disability is interpreted based on what

is considered normal functioning based on context, age group, or even income group income group

• For children, disability evaluation is a

challenge due to varying types of information source: parents / caregivers, age-inappropriate questions, methods

World Health Organization 2011

Evaluating Disability

• Functioning of a child must be

evaluated within the context of the evaluated within the context of the family and social environment e.g. in developing countries exposed to many risks such as poverty, malnutrition, poor health.

Disability and Rehabilitation across the lifespan

www.easierliving.com

Intra-comparison of Brief ICF Core Sets for Cerebral Palsy * using selected ICF categories

Sample ICF Categories < 6 yrs 6-13 yrs 14-18 yrs

Energy and drive Energy and drive Pain x High cognition x Daily routine Walking x x x Family relation x x x Immediate family Health services x x x

* Schiariti et al. 2013

Inter-comparison of Brief ICF Core Sets using selected ICF categories

Sample ICF Categories Multiple Sclerosis Traumatic Brain Injury Cerebral Palsy *

Energy and drive x x Pain x x x High cognition x x Daily routine x x Walking x x x Family relation x x x Immediate family x x Health services x x x

* Schiariti et al. 2013 (all ages)

Intra-comparison of ICF Core Sets for Cerebral Palsy and Traumatic Brain Injury

ICF categories TBI (adults) CP (up to 18 yrs)

Pain Visual Analogue Scale

• Face, Legs, Activity, Crying ,

Consolability Scale (2 mo-7 yr)

• Faces Pain Scale (3 yrs +)
• VAS (8 yrs +)

Walking 2-min Walk test

• Activities Scale for Kids 5-15 yrs
• Gross Motor Function 5 mo-16 yrs

Family relation Patient-reported Family / proxy-reported Health services Patient-reported Family / proxy-reported * Major life area Work Education

Take Home Message

• Functioning domains will vary between

adults vs. children

• Measurements will vary between adults
• Measurements will vary between adults
• vs. children
• ICF-based definitions and national data

standards on the ICF- comparability of measures and outcomes

• Be careful with comparison and

interpretation of data!

Part II Rehabilitation

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What is Rehabilitation?

• A set of measures that assist

individuals who experience or are likely to experience, disability to achieve and maintain optimal functioning in interaction with their environments

• Habilitation - “maximal functioning”

World Health Organization 2011

Understanding Rehabilitation

• Targets body functions and structures,

activities and participation, and activities and participation, and environmental and personal factors

• Can be single or multiple interventions,

carried out by one person or multiple people

World Health Organization 2011

Rehabilitation: Child with Cerebral Palsy

Unable to care Unable to care for self for self Intervention I Intervention I Therapy Therapy Assistive Technology Assistive Technology Family Education Family Education Measures I Measures I Posture Posture Physical Performance Physical Performance Ability of parents to take Ability of parents to take care care Measures I Measures I Posture Posture Physical Performance Physical Performance Ability of parents to take Ability of parents to take care care Difficulty walking Difficulty walking Communication Communication difficulties difficulties

World Health Organization 2011

care care care care Measures II Measures II Muscle tone Muscle tone Gait deviation Gait deviation Participation in education Participation in education Measures II Measures II Muscle tone Muscle tone Gait deviation Gait deviation Participation in education Participation in education Measures II Measures II Communication skills Communication skills Participation in education Participation in education Relationship with family Relationship with family Measures II Measures II Communication skills Communication skills Participation in education Participation in education Relationship with family Relationship with family Intervention II Intervention II Therapy Therapy Orthotics Orthotics Exercises Exercises Intervention III Intervention III Audiology Audiology AAC devices AAC devices Family Education Family Education

Expanding Research and Evidence-Based Practice

• Research can inform rehabilitation policies
• Research can inform rehabilitation policies

and programs

• Link between rehabilitation needs,

services, health outcomes, cost

• There is no common taxonomy of

rehabilitation (coming soon? Dijkers et al.)

• Heterogeneity of rehabilitation practice

Expanding Research and Evidence-Based Practice

• Few valid outcome measures
• Few valid outcome measures
• Patient participation in research
• Challenge in conducting controlled-trials
• Clinical practice guidelines e.g. CPG for

Congenital Musculoskeletal Torticollis (Kaplan et al. 2013) Thank you! escorpizo.reuben@gmail.com

Disclaimer: No part of this presentation can be reproduced or reprinted in any way unless there is written consent and permission of the author (R. Escorpizo). Materials and figures that were used for academic / scholarship purposes are the property of their developers / creators and were accordingly cited.

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