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. Margaret Chan, WHO Robert B. Zoellick, World Bank Dr. Reuben Escorpizo Our driving vision is of an Assistant Professor Louisiana State University, New Orleans USA inclusive world in which we Research Scientist are all able to live a life of ICF Research Branch of the WHO Swiss Paraplegic Research, Nottwil, Switzerland health, comfort, and dignity. What is disability? • Part of human condition • • Complex, multidimensional, dynamic www.easierliving.com • Shift from medical model to Disability and biopsychosocial model Rehabilitation across the lifespan What is disability? What is disability? • Umbrella term for impairments, activity • Results from the interaction between limitation, and participation restrictions persons with impairments and persons with impairments and • Negative aspects of the interaction • attitudinal and environmental barriers between a person with a health that hinder their full and effective condition and that person ’ s contextual participation in society on an equal factors (environment and personal basis with others factors) World Health Organization 2011 World Health Organization 2001

Demographics of ICF-Children & Youth Disability • Estimates of disability in children • International Classification of depend on the definition and measure Functioning, Disability and Health of disability • World Health Organization 2001 • World Health Organization 2001 • 0-14 yrs old with moderate-severe • Conceptual framework and disability (93 million, 5.1%), severe classification system disability (13 million, 0.7%) (GBD 2004) • Impact of health condition on • Varying prevalence 0.4 to 12.7% functioning (disability) (maybe due to that children do not get services and are not identified) World Health Organization 2011 Cerebral Palsy Health Condition Body Functions Activity Participation Body Structure Body Structure Environment Person www.predatornutrition.com www.athleticperformancetc.wordpress.com www.blog.telecom.toshiba.com www.playmasters.info www.wingwire.com Disability and Disability and Environment Environment • Environment influences the • Also includes policies experience and extent and service delivery of disability systems systems • Inaccessible • Attitude of others environment impeded participation and • Support and inclusion relationship with others • E.g. Lack of sign language intepreter, no ramp or elevator for wheelchair user World Health Organization 2011 www.oneidanation.org

Disability and Evaluating Disability Development • Disability is a development issue • A challenge because disability is • Impacts socioeconomics and impact on complex, multidimensional, and education and work / employment education and work / employment dynamic dynamic • Children with disabilities are less likely • Different definitions, question design, to attend school reporting sources, data collection • Households with children with method, and expectations of functioning • Need to evaluate the ICF components disabilities are likely to experience hardship (water, housing, sanitation, food, and healthcare) Same health condition Same health condition Different environment Different personal factors Different levels of participation Different levels of participation = = Different levels of Disability Different levels of Disability www.awwproject.org www.awwproject.org www.flickr.com www.flickr.com Evaluating Disability Evaluating Disability • Disability is interpreted based on what is considered normal functioning • Functioning of a child must be based on context, age group, or even evaluated within the context of the evaluated within the context of the income group income group family and social environment e.g. in • For children, disability evaluation is a developing countries exposed to many challenge due to varying types of risks such as poverty, malnutrition, poor information source: parents / health. caregivers, age-inappropriate questions, methods World Health Organization 2011

Intra-comparison of Brief ICF Core Sets for Cerebral Palsy * using selected ICF categories Sample ICF < 6 yrs 6-13 yrs 14-18 yrs Categories Energy and drive Energy and drive www.easierliving.com Pain x High cognition x Disability and Daily routine Walking x x x Rehabilitation across Family relation x x x Immediate family Health services x x x the lifespan * Schiariti et al. 2013 Inter-comparison of Brief ICF Intra-comparison of ICF Core Sets for Cerebral Core Sets using selected ICF Palsy and Traumatic Brain Injury categories CP (up to 18 yrs) ICF categories TBI (adults) Sample ICF Multiple Traumatic Cerebral • Face, Legs, Activity, Crying , Categories Sclerosis Brain Injury Palsy * Consolability Scale (2 mo-7 yr) Visual Analogue • Faces Pain Scale (3 yrs +) Pain Energy and drive x x Scale • VAS (8 yrs +) Pain x x x • Activities Scale for Kids 5-15 yrs High cognition x x Walking 2-min Walk test • Gross Motor Function 5 mo-16 yrs Daily routine x x Walking x x x Family relation Patient-reported Family / proxy-reported Family relation x x x Health services Patient-reported Family / proxy-reported Immediate family x x Health services x x x * Major life area Work Education * Schiariti et al. 2013 (all ages) Part II Take Home Message Rehabilitation • 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! www.psh-rehab.com www.123rf.com

What is Understanding Rehabilitation? Rehabilitation • A set of measures that assist • Targets body functions and structures, individuals who experience or are likely activities and participation, and activities and participation, and to experience, disability to achieve and environmental and personal factors maintain optimal functioning in • Can be single or multiple interventions, interaction with their environments • Habilitation - “ maximal functioning ” carried out by one person or multiple people World Health Organization 2011 World Health Organization 2011 Expanding Research Rehabilitation: Child with Cerebral Palsy and Evidence-Based Practice Measures I Measures I Measures I Measures I Intervention I Intervention I Posture Posture Posture Posture Unable to care Unable to care Therapy Therapy Physical Performance Physical Performance Physical Performance Physical Performance for self for self Assistive Technology Assistive Technology • Research can inform rehabilitation policies • Research can inform rehabilitation policies Ability of parents to take Ability of parents to take Ability of parents to take Ability of parents to take Family Education Family Education care care care care care care care care and programs Measures II Measures II Measures II Measures II Intervention II Intervention II • Link between rehabilitation needs, Muscle tone Muscle tone Muscle tone Muscle tone Therapy Therapy Difficulty walking Difficulty walking Gait deviation Gait deviation Gait deviation Gait deviation Orthotics Orthotics Participation in education Participation in education Participation in education Participation in education services, health outcomes, cost Exercises Exercises • There is no common taxonomy of Measures II Measures II Measures II Measures II Intervention III Intervention III Communication Communication Communication skills Communication skills Communication skills Communication skills rehabilitation (coming soon? Dijkers et al.) Audiology Audiology difficulties difficulties Participation in education Participation in education Participation in education Participation in education AAC devices AAC devices Relationship with family Relationship with family Relationship with family Relationship with family • Heterogeneity of rehabilitation practice Family Education Family Education World Health Organization 2011 Expanding Research and Evidence-Based Practice • Few valid outcome measures • Few valid outcome measures • Patient participation in research Thank you! • Challenge in conducting controlled-trials escorpizo.reuben@gmail.com • Clinical practice guidelines e.g. CPG for Disclaimer: No part of this presentation can be reproduced or reprinted in any way unless there Congenital Musculoskeletal Torticollis 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 (Kaplan et al. 2013) were accordingly cited. www.athleticperformancetc.wordpress.com