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Title: Advances in Understanding Children with Cerebral Palsy: Risk , Resiliency, Learning, and Independence


1
Advances in Understanding Children with Cerebral
Palsy Risk , Resiliency, Learning, and
Independence
  • Michael E. Msall MD
  • Partnering for Progress
  • Reaching For the Stars
  • Rehabilitation Institute of Chicago
  • Saturday August 11, 2007

2
Neurodevelopmental Disorders( Children 0-20
Years, POP 80 Million)
3
Neurologic and Genetic Disorders( Children 0-20
Years, POP 80 Million)
4
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5
ICF Model and Cerebral Palsy
6
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7
Parental Concerns About Function
  • Will my child be healthy?
  • Will my child walk?
  • Will my child talk?
  • Will my child learn self care?
  • Will my child learn at school?

8
Activities of Daily Living
  • Basic functions which occur daily
  • Self-Care (Feed, dress, groom, bathe)
  • Maintaining Continency
  • Moving, Changing Positions
  • Communication
  • Learning
  • Problem Solving/Social Interaction
  • They have been used developmentally,
    educationally and in rehabilitation

9
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12
1983-86 RCT Open InfasurfR
24-28 weeks n194

50 Betamethasone
89 Surfactant
55 Neither
Kwong, et al. Pediatrics 1985 76 585-92 and
198678 767-74
13
Neurodevelopmental Impairments
Neurodevelopmental morbidity among survivors
(N149). CP cerebral palsy MR mental
retardation
14
Functional Status at Kindergarten Entry
Msall et at. J Perinatology 1994 XIV 41-47
15
Functional Outcomes and Neurodevelopmental
Disability
Msall et at. J Perinatology 1994 XIV 41-47
16
Predictors of Functional Disability
  • Parenchymal Brain Injury (IVH 3-4, PVL)
  • Retinopathy of Prematurity
  • Sepsis

17
Kindergarten Readiness Status
9
50
41
Requirements for special education resources
among survivors of extreme prematurity (N149)
18
Predictors of Special Education Resources at
Kindergarten Entry
  • RR 95 CI
  • Poverty 7.3 2.5 - 21.4
  • Minority status 2.5 1.2 5.3
  • Male gender 2.4 1.1 5.0
  • Msall et al. AJDC 1992 1461371-1375

19
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20
Spectrum of Gross Motor Function in ELBW
Children with Cerebral Palsy_at_18Months
Spectrum of Gross Motor Function in ELBW
Children with Cerebral Palsy_at_18Months
  • Vohr BR, Msall ME, Wilson D, et al.
  • Pediatrics 2005116123-129

21
Background and Subjects
Background and Subjects
Background and Subjects
  • ELBW infants are at high risk of cerebral palsy
    and neurodevelopmental sequelae.
  • Children with cerebral palsy vary in their gross
    motor performance
  • 1860 ELBW infants born between 8/95 and 2/98
    evaluated at 18 4 months CA.

Vohr, et al., 2005
22
NICHD Network Sites
  • Case Western
  • Wayne State
  • University of Miami
  • U of New Mexico
  • University of Cincinnati
  • Indiana University
  • Harvard University
  • University of Alabama
  • Emory University
  • Univ. of Texas, Dallas
  • Emory University
  • U Tennessee, Memphis
  • Yale University
  • Stanford University
  • Brown University
  • Research Triangle NC

Vohr, et al., 2005
23
GMFCS _at_ 18 months
  • Level 0 Walks 10 steps independently
  • Level 1 Crawls, Pulls to stand, cruises
  • Level 2 Sits tripod, creeps
  • Level 3 Sits with support
  • Level 4 Rolls, good head control
  • Level 5 No head control

24
Cerebral Palsy Status at 18 months
  • Cerebral Palsy in 15.2
  • Abnormal Neuro in 7.5
  • Diplegia in 39
  • Quad/Tri in 33
  • Hemi/Mono in 18
  • EPS-Hypotonic in 10
  • Cerebral Palsy in 15.2
  • Diplegia in 39
  • Quad/Tri in 33
  • Hemi/Mono in 18
  • EPS-Hypotonic in 10

25
Risk Factors for CP
  • Lower GA (plt.0001)
  • IVH Grade 3-4 ((plt.001)
  • PVL (plt.001)
  • NEC (plt.005)
  • CLD (plt.001)
  • Postnatal steroids (plt.001)
  • Outborn (plt.01)

Vohr, et al., 2005
26
Neurologic Status and GMC
Neurologic Status and GMC
Vohr, et al., 2005
27
Neurologic Status and GMC
Vohr, et al., 2005
28
Multiple Disabilities(CPBlind/DD/HI)
  • Normal/Abnormal other 0
  • Monoplegia 64
  • Hemiplegia 55
  • Diplegia 83
  • Triplegia 88
  • Quadriplegia 100
  • EPS Hypotonic 89

29
Neurologic Status MDI ()
Vohr, et al., 2000
30
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31
Walking at 18 Months
  • 99.7 of normals
  • 85.9 of other abn neuro
  • 73 of di, hemi, monoplegia
  • 18 of tri, quadriplegia

Vohr, et al., 2005
32
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33
Health Status, Functional Limitations, Family
Supports and Health Related Quality of Life in
Children with Cerebral Palsy
  • Giles Robinson, Michael E. Msall,
  • Michelle R. Tremont, Mary Fournier,
  • and Maura Taylor
  • Brown University and University of Chicago
  • SDBP Chicago, IL March 17, 2006

34
Purpose
  • To describe medical, developmental, functional
    and social factors associated with health related
    quality of life (HRQOL) in children with cerebral
    palsy

35
Hypotheses
  • Higher levels of functional independence and
    family supports would be related to higher HRQOL
    ratings
  • Children with more severe cerebral palsy would
    have lower ratings of health status, functional
    status, and HRQOL

36
Measuring Quality of Live in Neurodevelopmental
Disabilities
-Adapted from Spilker
37
Developmental Status and Support Status
Assessments
  • Pediatric Functional Independence Measure
    (WeeFIM)TM self-care, mobility, communication
  • Functional Academic Resource Scale (FARS)
  • Family Support Scale
  • Support Function Scale
  • Health Utility Index - 2
  • Sensory, Mobility, Emotion, Cognitive, Self-care,
    Pain
  • Feeling Thermometer

38
Functional Academic Resource Scale
  • Describe your childs abilities in the following
    areas
  • Unsupervised play
  • Making friends with other children
  • Practical judgment
  • Following directions and completing chores
  • Running during a game
  • Participating in scouts, church, 4-H, band
  • (1significantly behind, 3about same,
    5considerably ahead)
  • The higher the score, the greater the
    friendships, social maturity, and community
    participation

39
Quality of Life Rating
  • Using hypothetical cases of varying degrees of
    health status, subject rates the cases and then
    self on a Feeling Thermometer
  • Self rating then becomes the HUI-2 Quality of
    Life Rating
  • Attributes
  • Sensory, Mobility, Emotion, Cognitive, Self-care,
    Pain, Fertility

40
Hypothetical HUI-2 Cases
  • Freida
  • Blind, deaf, unable to talk
  • No purposeful movement of arms or legs
  • Frequently hospitalized to control anger and
    irritability
  • Unable to learn and remember
  • Completely dependent with all self-care tasks
  • Frequent pain relieved by prescription narcotics
  • Adrian
  • Can see, hear, and talk normally
  • Can walk, bend, lift, jump, and run normally
  • Happy and not worried most of the time
  • Learns and does schoolwork normally without
    special help
  • Can eat, bathe, dress, and is continent
  • Free of pain
  • Cynthya
  • Wears glasses but can hear and speak normally
  • Walks, bends, and jumps with limitations, more
    slowly than others
  • Sometimes angry and fearful
  • Learns schoolwork very slowly and needs special
    help
  • Eats, bathes, dresses and uses the toilet
    independently with difficulty
  • Free of pain

41
Feeling Thermometer
Most Desirable100
Adrian
Least Desirable0
42
Pilot Cohort(n26)
  • 89 Caucasian
  • 46 Male
  • 50 Diplegia
  • 31 Hemiplegia
  • 19 Quadriplegia
  • Mean age7.9 years

43
Health Status (CHQ) and Functional Status
(WeeFIM), HUI-2 and Severity of Cerebral Palsy
CHQ Child Health Questionnaire Di/Hemi
Diplegia/Hemiplegia WFQ WeeFIM Quotient Quad
Quadriplegia HUI-2Health Utilities Index-2
44
Family Supports, HUI-2 and Severity of Cerebral
Palsy
FSS Family Support Scale Di/Hemi
Diplegia/Hemiplegia SFS Support Function
Scale Quad Quadriplegia HUI-2 Health Utilities
Index-2
45
HUI-2, Friendships and Community Participation
(FARS)

HUI-2 - Feeling Thermometer (self)
N-13
N-11
Plt.05
FARS Functional Academic Resource Scale
46
Functional Status, Friendships, and Community
Participation

WeeFIM Total Quotient
N-13
N-11
Plt.001
FARS Functional Academic Resource Scale
47
Results
  • Children with higher self reported quality of
    life (HUI-2) had significantly more friendships,
    community participation, and social maturity
    scores (FARS)
  • Children with higher reported quality of life had
    significantly more family supports
  • Children with higher functional status scores
    (WeeFIM) reported more friendships and social
    competencies and higher quality of life (HUI-2)
    ratings
  • Children with more severe cerebral palsy have
    lower health and functional status rating
  • No significant difference in HRQOL were found
    between children with diplegia/hemiplegia versus
    quadriplegia in this pilot study

48
Conclusion
  • Functional status and community participation are
    key components of quality of life in children
    with cerebral palsy
  • Explicit measurement strategies for a larger
    sample is required
  • Future research measures should include childs
    perception of quality of life

49
The Myths of Dyslexia
  • Mirror writing is a symptom of dyslexia
  • Eye training is a treatment for dyslexia
  • More boys than girls are dyslexic
  • Dyslexia can be outgrown
  • Smart people cannot be dyslexic

Shaywitz, Scientific American, Nov. 1996
50
Clues to Dyslexia in School-Age Children
  • History
  • Delayed language
  • Problems with the sounds of words
  • Expressive language difficulties
  • Difficulty naming
  • Difficulty learning to associate sounds with
    letters
  • History of reading and spelling difficulties in
    parents and siblings
  • Reading
  • Difficulty decoding single words
  • Particular difficulty reading nonsense or
    unfamiliar words
  • Inaccurate and labored oral reading
  • Slow reading
  • Comprehension often superior to isolated decoding
    skills

51
Clues to Dyslexia in School-Age Children
  • Language
  • Relatively poor performance on tests of word
    retrieval
  • Poor performance on tests of phonologic awareness
  • Relatively superior performance on tests of word
    recognition
  • Clues most specific to young children at risk for
    dyslexia
  • Difficulty with tests assessing knowledge of the
    names of letters, the ability to associate sounds
    with letters, and phonologic awareness
  • Clues most specific to bright young adults with
    dyslexia
  • Childhood history of reading and spelling
    difficulties
  • Accurate but not automatic reading
  • Slow performance on timed reading tests
  • Penalized by multiple-choice tests

52
Lessons from Research
  • RD is a language based disorder
  • Phonological processing is the key core
    developmental process
  • Reading single words from lists or text is the
    critical unit of analysis
  • Lyon GR, Chahabra. MRDD Research Rev 199622-9.

53
Phonological Awareness
  • The phoneme is the smallest unit of functional
    sounds
  • It can be measured in rhyming tasks, rapid
    naming, digit and word span, memory tasks
  • the ability of children to hear the at sound
    in hat and cat

54
Significance of Phonology Awareness Difficulties
  • Phonological awareness difficulties co-occur with
    reading disorders and impede the acquisition of
    reading skills
  • Limitations in phonological awareness lead to
    slow, labored, and inaccurate decoding of words
  • Inaccurate decoding leads to poor reading
    comprehension
  • The key to reading intervention is not context or
    memory, but skills in decoding single words

55
Intervention
  • Phonological deficits can be identified in
    kindergarten
  • Reading is the product of decoding and
    comprehension
  • The fundamental problem is the accurate and
    fluent identification of words
  • Gough 1996

56
Preventive Intervention in Reading
Disorders(N180)
  • Children selected by phonological awareness
    scores in kindergarten
  • Scores predict bottom 10 of children by second
    grade
  • Children had VIQ gt75
  • Random assignment to 4 curricula

57
Intervention
  • Phonological awareness at oral/motor level plus
    synthetic phonics (PA)
  • Implicit phonological awareness training plus
    phonics instruction of reading and spelling
    (Phonics)
  • Regular classroom support groups receiving
    individual instruction to support classroom
    reading (Resource)
  • No treatment control group (Control)

58
Intervention (cont.)
  • Each instructional group received 20 minutes (4
    times) per week one to one supplemental
    instruction in reading
  • Over 2.5 years, 88 hours of supplemental
    instruction occurred

59
Results at End of Grade 2
60
Results at End of Grade 2
61
Reading Disability and ADHD
  • 40 co-morbidity in referred samples
  • 15 co-morbidity in non-referred samples
  • The impact of ADHD on higher cognitive function
    is variable with primary impact on rote verbal
    learning and memory
  • ADHD exacerbates the cognitive morbidity of RD

62
Conclusion
  • Common sense holism
  • Be careful about grade repetition
  • Time on task matters
  • Promote prevention, resiliency, and community
    participation

63
Section 504 of Rehabilitation Act and IDEA 1997
(PL 105-17)
  • School must provide reasonable accommodations and
    necessary related services and special education
    supports. Helpful tools include
  • Peer tutoring
  • Cooperative learning
  • Graphic organizers
  • Study guides
  • Organizational routines
  • Learning strategies instruction

Lerner Yasutaki, pg 476.
64
Principals of Accommodation
  • Recognize individual differences in pacing and
    cognitive style and promote full inclusion
  • ADHD is not an excuse for threatening, noxious,
    or counterproductive behavior in school or
    employment

Hinchlaw in Accardo Whitman, 2000. Pg XV
65
WWW Resources
  • IDEA
  • Rehab Act 504
  • Chad.org
  • Allkindsofminds.org
  • AACPDM.org
  • Nichy.org
  • Dbppeds.org
  • Pediatrics.org
  • Eparent.com
  • Pathways.org

66
What We Should Do
  • Connect the dots examine the relationship among
    risk, structural difference, motor control, and
    developmental functioning
  • Evaluate interventions systematic assessments
    coupled with safe imaging and quality
    habilitative and family supports.
  • Use the best science to understand potential
    pathways that would decrease the functional
    severity of CP.
  • Understand the pathways of risk and protection
    among specific cohorts of children with one of
    the CP Syndromes.

67
Key Points
  • All children with cerebral palsy are children
    first, not a disease
  • All children with cerebral palsy learn
  • Most important preschool skills are curiosity,
    communication, hand skills and self-mobility
  • Adults with cerebral palsy rank communication,
    self-care, and education as the most important
    areas for long term success

68
Translational Research Opportunities
  • Critically important to understand biological
    markers that increase communicative, behavioral
    and learning impairments in vulnerable
    populations
  • Develop networks and mechanisms for tracking
    community outcomes for children receiving
    neonatal, cardiac, oncological, neurological and
    genetic interventions with respect to pathways of
    risk and resiliency
  • Optimizing outcomes among children with brain
    injury whether developmental or acquired
    requires quality family, neurodevelopmental
    and educational supports that promote functioning
    and social participation.
  • Current studies are underway examining transition
    to adulthood for teenagers with chronic illness
    and disability in order to better understand
    health, educational, vocational, and independent
    living outcomes.

69
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70
Acknowledgments
  • Supported by 1U01HD37614 entitled NICHD Family
    and Child Well Being Network Child Disability.
  • Irving Harris, Herb Abelson, Paula Jaudes, and
    Nancy Schwartz provided support of a shared
    vision and commitment to vulnerable populations.
  • Larry Gray, Peter Smith, Tom Blondis, Shelly
    Field, Melissa Gray, Rupa Nimmagada, Dilek
    Bishku, Jill Glick, Todd Schuble, Cybele Raver,
    and Diana Ryan provided critical feedback.
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