Recent advances in the assessment of children with cerebral palsy

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Recent advances in the assessment of children
with cerebral palsy

• Annette Majnemer PhD, OT
• School of Physical Occupational Therapy
• McGill University

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Throughout Life with Cerebral Palsy

• Partnership, Environment and Participation

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Key pieces to the puzzle

• Use of the most appropriate outcome measures
• Which outcomes are relevant?
• Whose perspectives are important?
• Which outcomes can we change?
• Outcome the end result of a process (clinical
  intervention, service, disease process)
• Outcome measure used to document characteristics
  or attributes of an individual

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Selecting outcome measures How have we advanced?
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Importance of measuring outcomes

• Patients and families
• Counsel families effectively
• Service providers
• Reflective practice, accountability
• Clinical managers, administrators
• Program planning, quality assurance
• Policymakers
• Resource allocation

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Factors to consider when assessing a child with
cerebral palsy
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I. Child family

• Concepts to consider
• Family-centred care
• Lifespan perspective
• Social disability model

• Areas to assess
• Pathology to participation what and why
• Personal goals and priorities (what)
• Current and future
• Obstacles and barriers (why)
• To guide short-term and long-term goals

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II. Service providers

• Areas to assess
• Child factors
• Impairments and activity limitations
• Life habits, preferences
• Environmental factors
• Home, school, community
• Family functioning
• To guide intervention strategies

• Concepts to consider
• ICF framework
• Transactive models
• Dynamic systems
• Person-Environment- Occupation (PEO)
• Program objectives
• Your professional role

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III. Managers, policymakers

• Concepts to consider
• Quality of services
• Structure
• Process
• Outcomes
• Cost-effectiveness

• Areas to assess
• Structure issues
• Access to services
• Process issues
• Satisfaction with services
• Outcomes
• Clinically significant change
• Alignment with program goals
• To guide resource allocation

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Purpose of measuring

• To identify the extent and nature of the health
  condition (the associated problems)
• Disease/disability focus
• To understand why the health condition and
  associated problems exist
• Biopsychosocial focus
• To appreciate the impact our services have on the
  childs health
• Service system focus

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Evaluation of children and youth with
disabilities

• Context of ongoing growth and development
• Age-appropriate measures
• Intermittent assessment
• Reliable and valid tools
• Guided by intended purpose of use
• Discriminate, compare, predict, evaluate

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Selecting outcome measures What should we be
measuring?

• Vignettes

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Sarah, 18 months old child with CP (spastic
hemiplegia)

• Sarah is sitting leaning to one side. Sarah
  enjoys watching the other children play. The
  right side of her body seems smaller than the
  left with slight increase in tone on the right.
  Sarah scoots on her bottom. Standing, Sarahs
  weight is on the left leg, with the right leg
  bent and the right heel not touching the floor.
  At home, Sarah cruises along the length of the
  couch but cannot climb up onto it. To get from
  standing to sitting she drops down onto her
  bottom. Sarah has a hard time picking up
  Cheerios. Sarah cries when you try to move her
  right arm. There is limited spontaneous use of
  the right hand. Sarah stabilizes a book with the
  right forearm while turning several pages at a
  time with the left hand. Sarah responds to her
  name, waves bye-bye, and has a ten-word
  vocabulary. Sarah babbles spontaneously and moves
  quickly from toy to toy. Mom first became
  concerned when Sarah wasnt sitting at 10 months,
  then a referral was made at the 12-month
  check-up. Mom is looking into daycare.

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Sarah, 18 months old

• Which key areas would you assess?

• Which assessment tools would you use?

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Daniel, 4 year old child with CP (spastic
quadriplegia)

• Parents work full-time live in a bungalow with a
  playroom in the basement. Mom is concerned about
  school as Daniel is not yet walking and he still
  wets himself. Undressing him, he helps by lifting
  up his left arm. Talking to him, Daniel responds
  with short sentences with effort. Strangers have
  a hard time understanding him. Sitting, Daniel
  supports himself with his right arm to reach for
  toys with left hand. Daniel bunny hops to get
  to toys. Daniel pulls up to stand using his arms
  to retrieve objects off the table. He plays with
  his brother in his adapted walker. On his adapted
  tricycle, Daniel can peddle, but needs help
  steering. Daniel enjoys playing with his friends
  but is easily distracted. Daniel is able to make
  simple lines and to complete a four-piece puzzle.
  Daniel uses an adapted spoon, eats small
  bite-size pieces and drinks from a straw. Daniel
  is a messy eater especially with liquids. Family
  rarely goes out. The grandparents can no longer
  look after him because he has become too heavy.
  It is difficult to find other babysitters. Daniel
  occupies himself with his computer games using an
  adapted mouse.

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Daniel, 4 years of age

• Which key areas would you assess?

• Which assessment tools would you use?

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Actual vs. best practices for young children with
CP A survey of pediatric OT and PTMaysoun
Saleh, L. Snider, N.Korner-Bitensky, et al
Developmental Neurorehabilitation, 2007 (oct),
1-21.

• Cross-sectional provincial survey (Quebec) of OTs
  and PTs that provide services to young children
  with CP
• Telephone interview 4 vignettes with questions
  about problem areas, assessment and intervention
  approaches, continuing education opportunities
• 85/93 eligible OTs participated, 62/74 PTs
  participated
• Panel of experts evidence Best practice

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Actual vs best practiceAssessment of Sarah (18
months)

• Actual practice
• OT
• Problems
• gt40 tone/control, positioning, fine motor,
  mobility 20-40 attention, pain, transitioning,
  gross motor, socialization, equipment, services
• Key areas assessed
• Hand /arm use, fine motor, gross motor, ADL
• Tools
• Talbot (non-stand 75) PDMS (35), lt5 QUEST,
  EDPA, VMI

• Actual practice
• PT
• Problems
• gt40 joint mobility, tone, control, positioning,
  mobility, gross and fine motor 20-40 attention,
  asymmetry, transitioning
• Key areas assessed
• Positioning, mobility, gross motor skills
• Tools
• GMFM (70), AIMS (28), goniometer (11)

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Actual vs best practiceAssessment of Daniel (4
years)

• Actual practice
• OT
• Problems
• gt40 ADL, feeding, cognition/perception,
  mobility, services, physical environment, 20-40
  attention, language, fine motor, gross motor,
  social integration, socialization, control,
  positioning, equipment
• Key areas assessed
• Cognition/perception, gross and fine motor, ADL,
  communication, physical environment (gt80)
• Tools
• Talbot PDMS (35), VMI (30), lt10 QUEST, EDPA,
  TSI

• Actual practice
• PT
• Problems
• gt40 attention, control, positioning, mobility,
  ADL, services 20-40 language, tone, gross
  motor, feeding, communication, socialization,
  family, equipment, physical environment
• Key areas assessed
• Positioning, mobility, gross motor skills (gt80)
• Tools
• GMFM (80), goniometer (16), PDMS (8), muscle
  strength (4)

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Actual vs best practiceAssessment and
interventions

• gt90 use at least one standardized tool
• Assessment focused on impairments and activity
  limitations (self care, mobility)
• To identify goals for treatment
• Little emphasis on
• play and leisure
• social integration, school readiness
• environment, family
• Barriers identified to using standardized
  measures
• Time constraints, training and education, family
  compliance

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Which outcomes are relevant?

• International Classification of Functioning,
  Disability and Health (ICF)
• a framework for selection of measures

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ICF framework

• Provides a conceptual framework for classifying
  an individuals functioning and health
• Adopts a bio-psychosocial model of disability
• Medical condition (severity, type of deficits)
• Socially-created process (barriers, attitudes)

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I. Functioning and disability

• Organ system level (impairments)
• Body structures
• Anatomical parts of the body
• Body functions
• Physiological functioning
• Psychological functioning

• Individual societal levels
• Activity (limitations)
• Execution of daily tasks
• Participation (restrictions)
• Involvement in life habits and roles
• Mobility, personal care, communication,
  education, domestic and community life,
  interpersonal relationships, spiritual life,
  leisure

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II. Contextual factors

• Personal factors
• Attributes of the person
• Lifestyle preferences
• Demographic factors
• Personality traits

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II. Contextual factors

• Environmental factors
• Physical access, aids/adaptations, transport,
  rehabilitation services
• Social lack of coordinated services, minimal
  emotional support
• Attitudinal lack of encouragement, inclusiveness

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Why assess contextual factors?

• Social model of disability
• Importance of home, school and community
  environments
• Key barriers to participation
• Financial difficulties
• Inadequate public services, equipment
• Psychosocial barriers
• Motivation, meaningful goals
• Self-perception influences involvement
• Family coping and stress

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Using ICF framework to select outcome measures

• Daniel, 12 year old boy
• Right hemiplegia
• Level I GMFCS, Level II MACS
• Recently arrived to Canada
• Motivated to learn new recreational activities

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Assessing body structure and body function
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Body structure and function

• Neurologic examination
• Neuroimaging and other laboratory tests
• Ashwal et al, 2004 Practice Parameter
• Clinical observations
• Tone, pattern, posture, coordination, strength,
  sensory loss, pain, contractures, alignment

• Modified Ashworth Tardieu Scales (spasticity)
• Goniometry (ROM)
• Dynamometer, Manual Muscle Testing (strength)
• Physician Rating Scale, Gait Analysis (gait)

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Body function

• Motor impairments
• Gross Motor Performance Measure
• Quality of Upper Extremity Movements
• Assisting Hand Assessment
• Standardized motor assessments (gross, fine)
• Developmental deficits
• Cognitive-perceptual, speech, behavior,
  social-emotional

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Assessing activity and participation

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Activity and participation

• Motor function
• Gross Motor Function Measure
• Severity classifications GMFCS, MACS

• Global functioning
• Pediatric Evaluation of Disability Inventory
  (PEDI)
• Functional Independence Measure for Children
  (WeeFIM)
• Activity Scale for Kids (ASK)
• Vineland Adaptive Behavior Scale (VABS)
• Life Habits (LIFE-H)
• Canadian Occupational Performance Measure (COPM)
• Childrens Assessment of Participation and
  Enjoyment (CAPE)

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Assessing contextual factors

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Contextual factors

• Clinical observations, informal interview,
  questionnaires
• Formal assessments (self-report)
• Dimensions of Mastery Questionnaire
• Preferences for Activities of Children
• Harter Self-Perception Scale
• Parenting Stress Index
• Family Environment Scale
• Social Support Scale
• European Child Environment Questionnaire
• Measure of the Quality of Environment

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Quality of life

• Quality of life a persons perception of their
  well-being and satisfaction with life
• Quality of life not part of ICF framework
• Biological, individual and societal components of
  ICF
• Contextual factors
• personal, environmental
• .the determinants of quality of life

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Advances in the assessment of children and youth
with cerebral palsy

• Tsad Kadima. A step forward

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Pediatric rehabilitationCurrent practice
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Pediatric rehabilitation

• Rehabilitation (Latin to make fit, to equip)
• Restoring or enhancing an individuals abilities
  to perform and participate in everyday activities
  
• Remediation and training (improve, acquire
  skills)
• Compensation and adaptation (modify tasks or
  environment)

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Pediatric rehabilitation A shift in focus

• Gradual shift from
• Medical model to fix deficits, cure
• Bio-psychosocial (ICF) model to participate
  fully in spite of deficits
• holistic perspective (ICF framework)
• intrinsic factors medical condition, personal
  characteristics
• extrinsic factors environmental facilitators
  and barriers

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Factors limiting use of available outcome
measures

• Service provider
• Time constraints (selective)
• Feasibility (home-based)
• Knowledge on use and interpretation
• Child
• Developmental limitations (cognitive, language)
• Comprehensive, interdisciplinary approach needed

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Research in childhood disabilityCurrent concepts
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Research in childhood disability

• Broader approach to the evaluation of infants,
  children and youth with disabilities
• New outcome measures available
• Pathology (causes, mechanisms)
• Body structure
• Body function
• Relationship to activity and participation
• Influence of environment
• Participation (involvement, engagement)
• Activity limitations, functioning
• Restrictions in life roles

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Research in CPOutcome measures

• New directions in the outcome evaluation of
  children with CP
• Sem Ped Neurol, Majnemer Mazer, 2004
• Studies published in 1992 vs. 2002 that included
  evaluation of outcomes children/youth with CP
  (medline, CINAHL, Eric, Psychinfo, Cochrane)
• 1992 26 articles 2002 77 articles
• Increased number of impairment-based measures
• Decreased proportion (but increased ) of
  functional measures
• New areas measured participation, quality of
  life, satisfaction, use of services
• 1992 18 included performance measures does
  do 2002 25
• 1992 14 standardized measures used 2002 49

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Health and social policy

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Framework for health and social policy

• Public policy
• The principles and programs adopted and pursued
  by government
• Need to enhance knowledge exchange
• outcomes data, research discoveries
• clinical practice experiences
• Science to practice
• Science to policy
• Practice/policy to scientists

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Best practice Future directions

• Holistic view of the child as they grow and
  develop
• Importance of contextual factors
• Individual preferences, motivation, social
  support, family functioning, environmental
  resources

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Throughout Life with Cerebral Palsy

• Partnership, Environment and Participation

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Throughout Life with Cerebral Palsy

• New issues and challenges to address at each
  stage of the childs development
• Causes recovery early identificationage-appropr
  iate client-centred treatment goalshealth
  promotion effectiveness of servicestransition
  planning

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Partnership, Environment and Participation

• Partnership
• Interdisciplinary teams to include the child and
  family
• Environment
• Home, school and community contexts
• Modifying the task and environment to promote
  autonomy, participation and life satisfaction
• Participation
• Involvement in meaningful activities and roles
  of the childs choosing

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