Monitoring and Supporting
Functional Skills among Children
with Cerebral Palsy
Ruth E. Benedict, DrPH, OTR
Associate Professor
Occupational Therapy Program
Department of Kinesiology
Objectives
• To provide an overview of the strengths and
limitations of classification systems and
assessment tools for determining function
among persons with CP
• To present current estimates of the
prevalence of gross motor function abilities
among children with CP
• To examine evidence for interventions
intended to maximize function and support
caregiving
OCCUPATIONAL THERAPY PROGRAM, UNIVERSITY OF WISCONSIN-MADISON
Function & Participation
Why care about function?
• As therapists, that is what we do
• Social vs. Medical model
– International Classification of Functioning,
Disability & Health (ICF)
– Role of Environment
• Predict future supports & service needs
• Program planning & policy
OCCUPATIONAL THERAPY PROGRAM, UNIVERSITY OF WISCONSIN-MADISON
Functional Limitations
• Are associated with:
– Greater need for services
• Home health, Equipment, Therapy,
Special Ed
– Greater impact on family
– Decreased access to health care services
– Inadequate insurance
– Perceived poorer quality interactions with
providers
OCCUPATIONAL THERAPY PROGRAM, UNIVERSITY OF WISCONSIN-MADISON
Functional Classification
Gross Motor Function Classification System
(GMFCS)
– Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E.,
Galuppi, B. (1997). Development and reliability of a system to
classify gross motor function in children with cerebral palsy.
Developmental Medicine and Child Neurology, 39, 214-223.
Manual Abilities Classification System (MACS)
– Eliasson, A.-C., Krumlinde-Sundholm, L., Rösblad, B., Beckung, E.,
Arner, M., Ohrvall, A.-M., et al. (2006). The Manual Ability
Classification System (MACS) for children with cerebral palsy: scale
development and evidence of validity and reliability. Developmental
Medicine and Child Neurology, 48(7 (Print)), 549-554.
OCCUPATIONAL THERAPY PROGRAM, UNIVERSITY OF WISCONSIN-MADISON
5 Levels of GMFCS
LEVEL I
-
Walks without Limitations
LEVEL II -
Walks with Limitations
LEVEL III -
Walks Using a Hand-Held
Mobility Device
LEVEL IV -
Self-Mobility with Limitations;
May Use Powered Mobility
LEVEL V -
Transported in Manual
Wheelchair
OCCUPATIONAL THERAPY PROGRAM, UNIVERSITY OF WISCONSIN-MADISON
What does the GMFCS tell us?
• Prediction of future motor ability
– Reliable after 2 years of age
• Answer or clarify common questions:
– “Will my child ever walk?”
• Guide treatment approaches and goals
• Client/Caregiver education regarding long term
equipment and care needs
OCCUPATIONAL THERAPY PROGRAM, UNIVERSITY OF WISCONSIN-MADISON
Stability & Decline of Function
Hanna, S.E., Rosenbaum, P.L., Bartlett, D.J., Palisano, R.J., Walter, S.D., Avery, L., Russell, D.J. (2009). Stability
and decline in gross motor function among children and youth with cerebral palsy aged 2 to 21 years.
Developmental Medicine & Child Neurology, 51(4):295-302.
MACS
Level I:
Handles objects easily and successfully. Do not restrict
independence in daily activities.
Level II:
Handles most objects but with somewhat reduced quality
and/or speed of achievement; alternative ways of performance
might be used.
Level III: Handles objects with difficulty; needs help to prepare and/ or
modify activities. Activities are performed independently of
they have been set up or adapted.
Level IV: Handles a limited selection of easily managed objects in
adapted situations. Requires continuous support and
assistance and/or adapted equipment.
Level V: Does not handle objects. Requires total assistance.
OCCUPATIONAL THERAPY PROGRAM, UNIVERSITY OF WISCONSIN-MADISON
Research to Practice
Surveillance
Common Interventions
Spasticity management
▲ Baclofen, Dantroline, Tizanidine
Botox, Selective dorsal rhizotomy, Diazepam
Contracture management
NDT (Neurodevelopmental Training)
▲ Casting UE, Orthotics, Hand surgery
Casting LE
Muscle strengthening
▲ Electrical stimulation, Strength training
Bone Density
Bisphosphonates
▲ Standing frames, Vitamin D, Vibration
Novak, I., McIntyre, S., Morgan, C., Campbell, L., Dark, L., Morton, N., Stumbles, E., Wilson, S., Goldsmith, S.
(2013). A systematic review of intervetnions for children with cerebral palsy: State of the evidence. Dev Med &
Child Neuro, 55:885-910
Motor Function
NDT, SI (Sensory Integration), Hyperbaric O2
▲ Biofeedback, Hydrotherapy, Hippo-therapy
▲ SEMLS (Single Event Multilevel
Surgery/Therapy)
▲ Therasuits, Conductive education, Vojta
(reflex locomotion)
Goal-directed training
CIMT, Bimanual training
OT (post UE Botox)
Context-focused therapy, Home programs
Novak, I., McIntyre, S., Morgan, C., Campbell, L., Dark, L., Morton, N., Stumbles, E., Wilson, S., Goldsmith, S.
(2013). A systematic review of intervetnions for children with cerebral palsy: State of the evidence. Dev Med &
Child Neuro, 55:885-910
Improved Function & Self-care
▲ NDT
▲ Pharmaceuticals (Botox, ITB)
▲ Selective dorsal rhizotomy
▲ Assistive devices, seating/positioning, Orthotics
▲ Massage, Sensory processing
Goal-directed training
Home programs
Novak, I., McIntyre, S., Morgan, C., Campbell, L., Dark, L., Morton, N., Stumbles, E., Wilson, S., Goldsmith, S.
(2013). A systematic review of intervetnions for children with cerebral palsy: State of the evidence. Dev Med &
Child Neuro, 55:885-910
Communication
▲ Training, AAC, Social stories, Oro-motor
Mealtime management
▲ Gastrostomy, Dysphagia management,
Fundoplication, Oro-motor
Behavior & social skills
▲ Behavior therapy, Social stories, Play therapy
Parent coping
▲ Behavior therapy, Communication training,
Coaching/Counseling
Novak, I., McIntyre, S., Morgan, C., Campbell, L., Dark, L., Morton, N., Stumbles, E., Wilson, S., Goldsmith, S.
(2013). A systematic review of intervetnions for children with cerebral palsy: State of the evidence. Dev Med &
Child Neuro, 55:885-910
Marcella Andrews, MPT, PCS
Dan M. Bolt, PhD
Michael Braun, MS, OTR
Ruth E. Benedict, DrPH, OTR
Model
of
Caregiving
Model of Caregiving
Caregiver
Characteristics
Child
Characteristics
Caregiver Strain
Measures
Age
BMI (based on weight & height)
Baseline Heart rate
Baseline Volume of oxygen
Function
GMFCS, MACS,
CP Child
Personal
Weight, length, age, type of CP,
BAD Score
Caregiving
Demands
Subjective
Borg Ratings of Perceived
Exertion Scale
Objective
Heart rate (HR);
Volume of oxygen
consumption (VO2)
Adapted from: Raina, P., O'Donnell, M., Rosenbaum, P., et al. (2005)
Methods
Participants:
Primary caregivers (N=19) of children and young adults
with cerebral palsy (ages 3-22 years) receiving an
Intrathecal Baclofen Pump who were recruited through a
Spasticity & Movement Disorders clinic.
Procedures:
Caregivers completed 3 successive tasks:
1) transfer wheelchair to mat
2) dressing
3) transfer from mat to wheelchair
Mean (Standard Deviation)
Caregivers
N = 19
Relation
Mother
Father
Age
< 45 years
>= 45 years
Weight (Kilograms)
Height (Centimeters)
Percent
(at
baseline)
89%
11%
0 months
(N=19)
6 months
(N=14)
12 months
(N=8)
-------
-------
--------
41.9 (7.0)
42.6 (7.8)
44.7 (7.6)
53%
47%
----------
80.0 (22.4) 85.9 (28.0)
86.0 (25.0)
----------
165.1 (9.1) 167.6 (8.9)
167.6 (7.6)
BMI
< 30
>= 30
HR (bpm)
58%
42%
----------
VO2 (mL/kg/min)
----------
29.1 (6.8)
30.2 (8.6)
30.6 (9.0)
73.5 (11.2)
73.5 (9.7)
74.4 (8.9)
11.7 (2.5)
11.4 (2.4)
12.3 (1.4)
Correlations between
subjective and objective
measures of energy
exertion
Borg RPE
(N=114)
HR
(N=116)
Borg RPE
HR
.182
VO2
.488*
.363*
Controlling for Baseline HR & VO2 (N=110)
Borg RPE
HR
.289 *
VO2
.425**
a Borg Ratings of Perceived Exertion Scale;
b Heart rate; c Volume of oxygen consumed
* p < 0.01; ** p<0.001
.630**
VO2
Discussion
•
Borg appears to be sensitive to between and within
person differences in exertion
•
Short duration or anaerobic nature of the caregiving
tasks may have prevented capture of change in HR
•
Further research is needed to examine other
components of perceived exertion (e.g. mental
fatigue)
•
Some self-identified goals for ITB intervention show
general improvement in performance and satisfaction
•
Limitations of the pilot nature of this work
Acknowledgments
WisADDS (Wisconsin Autism and Developmental Disabilities Surveillance)
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Maureen Durkin, Principal Investigator
Carrie Arneson, Project Coordinator
Matt Maenner, PhD (doctoral student)
Jean Patz, OTR, Clinician Reviewer
Abstractors
Waisman/UW Health SMD Team
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Leland Albright
Marcella Andrews
Taryn Bragg
Michael Braun
Anne Harris
Emily Kline
Andrea Olson
Rae Sprague
Christa Tober
CDC – ADDM Project
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Marshalyn Yeargin-Allsopp
Nancy Doernberg
Kim Van Naarden Braun
Alabama Site
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Russ Kirby
Beverly Mulvihill
Martha Wingate
Sheree Chapman York
Missouri Site
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Rob Fitzgerald
Kathy Herndon
Shulamit Portnoy
Cathy Yungbluth
And, of course, the many families
and children whose lives are
affected by cerebral palsy