Move & Play

Description

MOve and Play logoUnderstanding Determinants of Motor Abilities, Self-Care, and Play of Young Children with Cerebral Palsy (Move & PLAY Study)  2006-2009


In this study, we aim to gain a better understanding of the child, family, and service delivery factors that support the development of movement abilities, self- care skills, and play of preschool children with cerebral palsy. The preschool years are a critical period for these children, and early success predicts a child's future participation in education, social roles and employment. Rehabilitation therapists who work with these children and their families have difficulty selecting the best interventions because of the complexities of the multiple factors that contribute to development. The purpose of this grant is to study a large number of children over a period of one year to gain this understanding. We have recruited 430 children in selected sites in both Canada and the United States. We believe that the results of our study will provide very useful information to improve the effectiveness and efficiency of rehabilitation services for preschool children with cerebral palsy. Significant factors that are amenable to change will be targets for a range of future intervention options. Factors that cannot change will assist with realistic goal setting within each child's potential.


Cerebral palsy (CP) is the most prevalent childhood neuromuscular condition seen by rehabilitation practitioners; however, the evidence base supporting rehabilitation practice from a holistic perspective is very weak. Much is yet to be learned about the multiple child, family, and environmental factors that contribute to outcomes important to these children and their families. We propose to test a multivariate conceptual model of determinants of basic motor abilities, self-care, and play, that is consistent with systems theory, the theory of human ecology, and a philosophical approach incorporating family-centred care in the context of the framework of the World Health Organization's Functioning, Disability, and Health, of functionally distinct groups of young children with CP (Study Model)


Research Plan: We are employing a prospective cohort research design to test our conceptual model of the multiple determinants of change in basic motor abilities, self-care and play of young children with CP. Four hundred and thirty children with CP between the ages of 18 months and 4.5 years, stratified by GMFCS level  have been recruited (study brochure) from centres across Canada and the United States, using quota convenience sampling (map) (table of sites). Each child enrolled in the study will be followed over a period of one year. At the first data collection point, we will collect data on basic motor abilities, self-care, and play, in addition to measures of child adaptive behaviour, primary and secondary impairments, and related health conditions. At the mid-point, we will collect data on family function and services received. Finally, at the end of the year, we will collect data on basic motor abilities, self-care and play for a second time (timing of data collection and measures). Data analysis will first involve a thorough descriptive analysis, followed by evaluation of the fit between our proposed model and the data collected in the GMFCS groups using structural equation modeling. Sensitivity to change will be determined, as will the correlation between a range of service factors with outcomes over the period of one year. Confirmatory factor analysis will be used to identify the key indicators.


Impact: Three fundamental goals of early rehabilitation for children with CP are:

  1. to optimize motor function within each child's prognostic potential;
  2. to prevent the development of secondary conditions that impact life-long health: and 
  3. to promote children's participation in their daily lives.

We believe that the results of this study will facilitate accomplishment of these goals by fundamentally changing how rehabilitation services are offered to preschool children with CP across North America. From the results of model testing, significant determinants that are amenable to change will be targets for future intervention, thus contributing to more effective service delivery. In contrast, but equally important, significant determinants that are not amenable to change will assist with realistic goal setting, thus enhancing efficiency of services. The knowledge gained in this proposed research will optimize outcomes important to children and their families, at a critical period in the preschool years, which will influence their subsequent participation in education, employment, leisure, and social roles.


Research Team

Investigators, collaborators, consultants and staff


Doreen Bartlett, PT, PhD, University of Western Ontario 
Lisa Chiarello, PT, PhD, PCS, Drexel University
Robert Palisano, PT, PhD, Drexel University
Peter Rosenbaum, MD,FRCP(C), McMaster University, CanChild Centre for Childhood Disability Research 
Sally Westcott McCoy, PT, PhD, University of Washington 
Lynn Jeffries, PT, PhD, PCS, Langston University
Beth Tieman, PT, PhD,
Alyssa LaForme Fiss, PT, PhD, PCS, Georgia State University, Regional Coordinator, Atlanta region
Barbara Stoskopf, RN, MHSc, McMaster University, CanChild Centre for Childhood Disability Research, Project Coordinator
Audrey Wood, PT, MS, Drexel University, Regional Coordinator, Greater Philadelphia region
Allison Yocum, PT, DSc, PCS, University of Washington, Regional Coordinator, Greater Seattle-Tacoma region  
Kamal Mangat, CanChild Centre for Childhood Disability Research 
Barbara Sieck Taylor, USA, Parent consultant
Tina Hjorngaard, Canada, Parent consultant 


For more information, contact:
Barbara Stoskopf, Project Coordinator


Funders

This project is funded through two sources:
The Canadian Institutes of Health Research, MOP - 81107 (2006-2009)
U.S. Department of Education, National Institute of Disability and Rehabilitation Research, H133G060254 (2006-2009) 


Outcomes (Measures)

  1. Basic motor abilities:
    - Gross Motor Function Measure (GMFM)
  2. Engagement in Self-Care and Play:
    - Child Engagement in Daily Life Measure (developed by investigators)
    - Test of Playfulness 
  3. Determinants of Outcomes
    Primary Impairments
    - Spasticity: Modified Ashworth Scale (MAS)
    - Quality of movement: Gross Motor Performance Measure (GMPM)
    - Balance: Pediatric Berg Balance Scale for Children
    - Distribution of Involvement: measure indicates limb involvement (developed by investigators)

    Secondary Impairments
    - Range of motion: Spinal Alignment and Range of Motion Scale (SAROMM)
    - Muscle Strength: measured on a 5 point ordinal scale (1=extreme weakness, 5=normal strength) (developed by investigators)
    - Endurance: questionnaire measures level of energy, fatigue with activity and amount of activity typically engaged in (developed by investigators)

    Associated Conditions and Co-Morbidities:
    - Chronic Health Problems: number of problems and extent to which they effect child's activities (developed by investigators)
    - Health Care Utilization (developed by investigators)

    Child Adaptive Behaviour:
    - Early Coping Inventory: measures adaptive behaviours in 3 domains- Sensorimotor Organization, Reactive Behaviours, Self-Initiated behaviours;  

    Family Ecology:
    -     Family Environment Scale: measures family function in 3 dimensions- Relationships, Personal growth, System maintenance
    - Family Expectations of Child (developed by investigators)
    - Family Support to Child (developed by investigators)
    - Family Support Scale

    Rehabilitation Services:
    -     Services Questionnaire (developed by investigators)
    - Measures aspects of services received: types and intensity of programs, availability and access of services, coordination of services, extent to which services meet needs of child, focus of therapy interventions.

 

ResourcesSelected references


Newsletters

Parent newsletter #1
Parent newsletter #2
Parent newsletter #3 


Presentations

Child, family, and service factors influencing early participation of young children with cerebral palsy: Implications for intervention (Part A)
Doreen Bartlett
  • Presentation presented at the Norwegian Pediatric Physical Therapy Annual Conference, Oslo, March 2010.
Child, family, and service factors influencing early participation of young children with cerebral palsy: Implications for intervention (Part B)
Lisa Chiarello
  • Presentation presented at the Norwegian Pediatric Physical Therapy Annual Conference, Oslo, March 2010.
Conceptual model from the Move and Play Study
Lisa Chiarello and Doreen Bartlett.
  • Presentation presented at the Norwegian Pediatric Physical Therapy Annual Conference, Oslo, March 2010.
Comparison of family and therapist perceptions of therapy services provided to young children with cerebral palsy.
Alyssa LaForme Fiss; Sarah McCoy; Lisa Chiarello; Move and PLAY study team.
  • Poster presented at the American Physical Therapy Association's Combined Sections Meeting, San Diego, California, February 2010.
How are we intervening to improve children's activity and participation: Beginning to open the black box.
Sarah W. McCoy, Lynn Jeffries.
  • Educational session presented at the American Physical Therapy Association's Combined Sections Meeting, San Diego, California, February 2010.
Playfulness of Young Children with Cerebral Palsy.
Lisa Chiarello (presenter), Hui-Ju Chang.
  • Platform presentation presented at the American Physical Therapy Association's Combined Sections Meeting, San Diego, California, February 2010.
Reliability and validity of an Endurance Questionnaire in young children with cerebral palsy.
Jessica Mendoza; Sarah McCoy; Eli Zygmuntowicz; Ben Kevan; Elisa Katsel; Move & PLAY Study Team
  • Poster presented at the American Physical Therapy Association's Combined Sections Meeting, San Diego, California, February 2010.
Distribution of Impairments by Gross Motor Function Classification and age in young children with cerebral palsy
Sarah W. McCoy, Lynn Jeffries, Doreen Bartlett; Move & PLAY study team.
  • Poster presented at the American Academy for Cerebral Palsy and Developmental Medicine, Scottsdale, Arizona, September 2009.
  • Abstract published as McCoy SW, Jeffries L, Bartlett D & Move & PLAY. Developmental Medicine and Child Neurology. 2009; 51(suppl 5):73-4.
Measuring Health Conditions of Young Children with Cerebral Palsy.
Doreen Bartlett, Lisa Chiarello, Hui-Ju Chang; Move & PLAY Study Team
  • Poster presented at the American Academy for Cerebral Palsy and Developmental Medicine, Scottsdale, Arizona, September 2009.
  • Abstract published as Bartlett D, Chiarello L, Chang H & Move & PLAY. Developmental Medicine and Child Neurology. 2009; 51(suppl 5):72.
Child Engagement in Daily Life of Young Children with Cerebral Palsy
L Chiarello, H Chang; Move and PLAY study team
  • Poster presented at the American Academy for Cerebral Palsy and Developmental Medicine, Scottsdale, Arizona, September 2009.
  • Abstract published as Chiarello L, Chang H. & Move & PLAY Developmental Medicine and Child Neurology. 2009; 51(suppl 5):72-73.
Validity, Reliability and Time to Completion of Two Abbreviated Versions of the Gross Motor Function
Laura Brunton, Doreen Bartlett and Dianne Russell
  • Platform presentation presented at the American Academy for Cerebral Palsy and Developmental Medicine, Scottsdale, Arizona, September 2009.
  • Abstract published as Brunton L, Bartlett D, Russell D. Developmental Medicine and Child Neurology. 2009; 51(suppl 5):25.
Supporting Motor Development, Self-care and Play of Preschool Children with Cerebral Palsy: Implications for Clinical Decision Making in Early Intervention.
Bartlett D, Chiarello L.
  • Workshop presented at the Combined Section Meeting of the American Physical Therapy Association, Las Vegas, Feb. 12, 2009
Sharing of Lessons Learned from Multisite Research
McCoy SW, Bartlett D, Chiarello L, Jeffries L, Palisano R, Stoskopf B, Wood AJ, Fiss AL, Tieman B, Yocum A.
  • Poster presented at the Combined Section Meeting of the American Physical Therapy Association, Las Vegas, Feb. 12, 2009