Monitoring and Supporting Functional Skills among Children with Cerebral Palsy

Ruth E. Benedict, DrPH, OTRAssociate Professor

Occupational Therapy ProgramDepartment 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


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


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


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.


5 Levels of GMFCSLEVEL 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


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.


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, DiazepamContracture management

NDT (Neurodevelopmental Training)▲ Casting UE, Orthotics, Hand surgery

Casting LEMuscle strengthening

▲ Electrical stimulation, Strength trainingBone 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 FunctionNDT, SI (Sensory Integration), Hyperbaric O2

▲ Biofeedback, Hydrotherapy, Hippo-therapy▲ SEMLS (Single Event Multilevel

Surgery/Therapy)▲ Therasuits, Conductive education, Vojta

(reflex locomotion)Goal-directed trainingCIMT, Bimanual trainingOT (post UE Botox)Context-focused therapy, Home programs



Improved Function & Self-care▲ NDT▲ Pharmaceuticals (Botox, ITB)▲ Selective dorsal rhizotomy▲ Assistive devices, seating/positioning, Orthotics▲ Massage, Sensory processing

Goal-directed trainingHome programs



Communication▲ Training, AAC, Social stories, Oro-motor

Mealtime management▲ Gastrostomy, Dysphagia management,

Fundoplication, Oro-motorBehavior & social skills

▲ Behavior therapy, Social stories, Play therapyParent coping

▲ Behavior therapy, Communication training, Coaching/Counseling



Marcella Andrews, MPT, PCS Dan M. Bolt, PhD

Michael Braun, MS, OTR Ruth E. Benedict, DrPH, OTR

Model of CaregivingAge

BMI (based on weight & height) Baseline Heart rate

Baseline 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 .18

2

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

AcknowledgmentsWisADDS (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

Documents

Monitoring and Supporting Functional Skills among Children with Cerebral Palsy