Ruth E. Benedict, DrPH, OTRAssociate Professor
Occupational Therapy Program
Department of Kinesiology
Monitoring and Supporting Functional Skills among Children
with Cerebral Palsy
OCCUPATIONAL THERAPY PROGRAM, UNIVERSITY OF WISCONSIN-MADISON
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
Function & Participation
OCCUPATIONAL THERAPY PROGRAM, UNIVERSITY OF WISCONSIN-MADISON
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
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.
OCCUPATIONAL THERAPY PROGRAM, UNIVERSITY OF WISCONSIN-MADISON
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.
Research to Practice
Surveillance
Common Interventions
Spasticity management▲ Baclofen, Dantroline, Tizanidine
Botox, Selective dorsal rhizotomy, Diazepam
Contracture managementNDT (Neurodevelopmental Training)
▲ Casting UE, Orthotics, Hand surgery
Casting LE
Muscle strengthening▲ Electrical stimulation, Strength training
Bone DensityBisphosphonates
▲ Standing frames, Vitamin D, VibrationNovak, 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 FunctionNDT, 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
AgeBMI (based on weight & height)
Baseline Heart rateBaseline Volume of oxygen
PersonalWeight, length, age, type of CP,
BAD Score
FunctionGMFCS, MACS,
CP Child
CaregivingDemands
ObjectiveHeart rate (HR);
Volume of oxygen consumption (VO2)
SubjectiveBorg Ratings of Perceived
Exertion Scale
CaregiverCharacteristics
ChildCharacteristics
Caregiver Strain
Measures
Model of Caregiving
Adapted from: Raina, P., O'Donnell, M., Rosenbaum, P., et al. (2005)
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 mat2) dressing3) transfer from mat to wheelchair
Methods
Caregivers N = 19
Percent
(at baseline)
Mean (Standard Deviation)
0 months(N=19)
6 months(N=14)
12 months(N=8)
RelationMotherFather
89%11%
-------
-------
--------
Age< 45 years>= 45 years
53%47%
41.9 (7.0)
42.6 (7.8)
44.7 (7.6)
Weight (Kilograms) ---------- 80.0 (22.4) 85.9 (28.0)
86.0 (25.0)
Height (Centimeters)
---------- 165.1 (9.1) 167.6 (8.9)
167.6 (7.6)
BMI < 30>= 30
58%42%
29.1 (6.8) 30.2 (8.6)
30.6 (9.0)
HR (bpm) ---------- 73.5 (11.2) 73.5 (9.7) 74.4 (8.9)
VO2 (mL/kg/min) ---------- 11.7 (2.5) 11.4 (2.4) 12.3 (1.4)
Borg RPE (N=114)
HR(N=116)
VO2
Borg RPE
HR .182
VO2 .488*
.363*
Controlling for Baseline HR & VO2 (N=110)
Borg RPE
HR .289 *
VO2 .425** .630**
Correlations between subjective and objective measures of energy exertion
a Borg Ratings of Perceived Exertion Scale; b Heart rate; c Volume of oxygen consumed* p < 0.01; ** p<0.001
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
And, of course, the many families and children whose lives are
affected by cerebral palsy
Waisman/UW Health SMD Team– Leland Albright– Marcella Andrews– Taryn Bragg– Michael Braun– Anne Harris– Emily Kline– Andrea Olson– Rae Sprague– Christa Tober
Acknowledgments
WisADDS (Wisconsin Autism and Developmental Disabilities Surveillance)– Maureen Durkin, Principal Investigator– Carrie Arneson, Project Coordinator– Matt Maenner, PhD (doctoral student)– Jean Patz, OTR, Clinician Reviewer– Abstractors
CDC – ADDM Project– Marshalyn Yeargin-Allsopp– Nancy Doernberg– Kim Van Naarden Braun
Alabama Site– Russ Kirby – Beverly Mulvihill– Martha Wingate– Sheree Chapman York
Missouri Site– Rob Fitzgerald– Kathy Herndon– Shulamit Portnoy– Cathy Yungbluth