Participation of Children and Youth with and without Cerebral Palsy across Settings: An Exploratory Study

Introduction: Cerebral Palsy is one of the most common pediatric health conditions resulting in childhood disability. Children with CP experience varying levels of functional impairments due to muscle weakness, alterations in muscle tone, balance deficits, and loss of selective motor control. These impairments and activity limitations are thought to contribute to lower levels of participation. Studies examining participation of children with CP have found that participation is positively correlated with increased physical activity and have concluded that environment is a significant predictor of participation. However, research examining participation across specific environments is lacking. Additionally, research investigating the influence of various social and physical characteristics, such as age, sex, and gross motor ability, on participation of children with CP has yielded inconsistent results. Objectives: The primary objectives of this exploratory study were to examine differences in participation of children/youth with and without cerebral palsy (CP) across home, school, and community settings, and examine participation of children with CP across age groups and sex, and between ambulatory and non-ambulatory children in those settings. Methods: This was a cross-sectional survey study of parents of children with CP (n = 20) and without CP (n = 20) from March through May 2022 using the Participation and Environment Measure for Children and Youth© (PEM-CY). The PEM-CY is the first measure to evaluate participation in important activities across three settings, or environments--home, school, and community, and assesses frequency of participation and level of involvement. An anonymous electronic survey was created in REDCap® that included demographic questions in addition to the PEM-CY queries. Due to normality violations and the small sample size, non-parametric bivariate analyses were performed using Mann-Whitney U tests and Kruskal-Wallis H tests. Results: Significantly greater frequency of participation at home and in community was reported for children without CP, similar to previous research. However, participation at school was not significantly different between the groups. In children with CP, motor function significantly impacted participation in home and school environments, and age significantly influenced school participation, with parents of younger children reporting significantly less participation in the school setting. Level of involvement across all environments was not significantly different for children with and without CP in this sample. Also, no significant participation differences were noted between males and females with CP. Conclusion: Aligning with prior research, this exploratory study suggests that frequency of participation in children with CP is less than children without CP and is affected by gross motor function classification. Although frequency of participation was less in home and community environments, children are equally involved when they do participate. Unlike previous study results, school participation between children with and without CP was not significantly different, but was impacted by age. Larger population-based or case-controlled studies are recommended using the PEM-CY© to further explore the impact of environment on participation. Examination of participation data provides valuable information to support goals and interventions that facilitate participation across environments and impact modifiable environmental factors

Validity of the Early Activity Scale for Endurance and the 6-Minute Walk Test for Children With Cerebral Palsy.

PURPOSE: This study aimed to describe Early Activity Scale for Endurance (EASE) scores and 6-minute walk test (6MWT) distances of children with cerebral palsy (CP) by functional ability level, sex, and age and to examine the convergent validity of the 2 tests. METHODS: A total of 708 participants with CP, Gross Motor Function Classification System (GMFCS) levels I to V, completed the EASE, and 376 of the study participants (3-12years), GMFCS levels I to III, completed the 6MWT. RESULTS: Children with CP vary in EASE scores and 6MWT distances based on GMFCS level and, to a lesser extent, age. The EASE and the 6MWT demonstrate a statistically significant but low, positive correlation. CONCLUSIONS: Understanding the relationship between these outcomes and GMFCS levels and age assists clinicians in establishing plans of care targeted at improving endurance for activity and functional walking capacity for children with CP

Developmental Trajectories and Reference Percentiles for the 6-Minute Walk Test for Children With Cerebral Palsy.

PURPOSE: The purposes of this study were to document longitudinal developmental trajectories in 6-minute walk test (6MWT) distances and to develop age-specific reference percentiles for children across different Gross Motor Function Classification System (GMFCS) levels. METHODS: A TOTAL OF: 456 children with cerebral palsy ages 3 to 12 years of, GMFCS levels I to III participated. Children\u27s motor function was classified on the GMFCS, and children completed the 6MWT 2 to 5 times in 2 years. RESULTS: Longitudinal developmental trajectories support that 6MWT distances increase with age followed by a tapering, as children approach their functional limit relative to their GMFCS level. Reference percentile graphs were created to monitor change over time. CONCLUSIONS: The 6MWT longitudinal developmental trajectories, reference percentiles, and interpretation of percentile change should assist collaborative and proactive intervention planning relative to functional walking capacity for children with cerebral palsy

Developmental Trajectories and Reference Percentiles for Range of Motion, Endurance, and Muscle Strength of Children With Cerebral Palsy.

BACKGROUND: Children with cerebral palsy (CP) frequently present with secondary impairments in spinal alignment and extremity range of motion, endurance for activity, and muscle strength. Creation of developmental trajectories for these impairments will help guide clinical decision-making. OBJECTIVE: For children in each level of the Gross Motor Function Classification System (GMFCS) this study aimed to: (1) create longitudinal developmental trajectories for range of motion (Spinal Alignment and Range of Motion Measures [SAROMM]), endurance (Early Activity Scale for Endurance [EASE]), and functional strength (Functional Strength Assessment [FSA]); and (2) develop age-specific reference percentiles and amount of change typical over 1 year for these outcomes. DESIGN: This study used a longitudinal cohort design. METHODS: Participants comprised 708 children with CP across GMFCS levels, aged 18 months up to the 12th birthday, and their families. In 2 to 5 assessments every 6 months over 2 years, trained therapists performed the SAROMM and FSA, and parents completed the EASE questionnaire. For children in each GMFCS level, longitudinal trajectories using linear and nonlinear mixed-effects models from all visits, and reference percentiles using quantile regression from the first, 12-month, and 24-month visits were created for each measure. RESULTS: Longitudinal trajectories and percentile graphs for SAROMM, FSA, and EASE were primarily linear, with different performance scores among GMFCS levels. There was much variability in both longitudinal trajectories and percentiles within GMFCS levels. LIMITATIONS: Limitations included a convenience sample and varying numbers of participants assessed at each visit. CONCLUSIONS: The longitudinal trajectories and percentile graphs have application for monitoring how children with CP are performing and changing over time compared with other children with CP. The resources presented allow therapists and families to collaboratively make decisions about intervention activities targeted to children\u27s unique needs

Physical, occupational, and speech therapy for children with cerebral palsy.

AIM: To explore the relationship between rehabilitation therapies and development in children with cerebral palsy (CP). METHOD: We conducted a prospective, longitudinal study involving 656 children with CP (mean age [SD] 6y [2y 8mo] at study entry; 1y 6mo-11y 11mo; 287 females, 369 males), and their parents. Children were assessed two to five times over 2 years by therapists using standardized measures of balance and walking endurance. Parents completed questionnaires on demographics, rehabilitation therapies, and their children\u27s performance in self-care and participation in recreation. Therapists and parents collaboratively classified children\u27s Gross Motor Function Classification System (GMFCS) levels. We created longitudinal graphs for each GMFCS level, depicting change across time using centiles. Using multinomial models, we analyzed the relationship between therapies (amount, focus, family-centeredness, and the extent therapies met children\u27s needs) and whether change in balance, walking endurance, and participation was \u27more than\u27 and \u27less than\u27 the reference of \u27as expected\u27. RESULTS: Children were more likely to progress \u27more than expected\u27 when participating in recreation when therapies were family-centered, met children\u27s needs, and focused on structured play/recreation. A focus on health and well-being was positively associated with participation and self-care. The amount of therapy did not predict outcomes. INTERPRETATION: Therapy services that are family-centered, consider the needs of the child, and focus on structured play/recreational activities and health/well-being may enhance the development of children with CP

Developmental Trajectories for the Early Clinical Assessment of Balance by Gross Motor Function Classification System Level for Children With Cerebral Palsy.

Background: Children with cerebral palsy (CP) characteristically present with impairments in balance. Currently, the pattern and timing of the development of balance ability have not been described for children with CP of varying Gross Motor Function Classification System (GMFCS) levels. Objective: The purpose of this study was to document longitudinal developmental trajectories in a measure of balance, the Early Clinical Assessment of Balance (ECAB) scores, along with age-specific reference percentiles and the amount of change typical over a 1-year period for children within different GMFCS levels. Design: The design was a longitudinal cohort study. Methods: Participants included 708 children with CP, aged 18 months through their 12th birthday, and their families. Children participated in 2 to 5 assessments using the GMFCS and ECAB. Results: Longitudinal trajectories describing the average change in the ECAB score with respect to age were created by fitting separate nonlinear mixed-effect models for children in each GMFCS level. Reference percentiles were constructed using quantile regression of ECAB data from the first visit (baseline) and 12-month and 24-month visits. Using these reference points, the amount of change in percentiles was calculated for all children by subtracting the baseline percentile score from the 12-month percentile score. Children whose percentile changes are within the 80% limits can usually be described as developing as expected for their age and GMFCS levels. Limitations: Limitations of this study included use of a convenience sample, a ceiling effect of the ECAB for some children in GMFCS levels I and II, and the use of both a 12-month and 24-month study protocol that impacted the number of children available for each assessment session. Conclusions: When used appropriately to monitor development and change over time for children with CP, the ECAB longitudinal trajectories, reference percentiles, and the associated change scores presented here should assist therapists and families in collaborative interaction to proactively plan services and interventions relative to balance ability

Comparison of Family and Therapist Perceptions of Physical and Occupational Therapy Services Provided to Young Children with Cerebral Palsy

ABSTRACT. The purpose of this study was to determine whether parents and thera

Examination of the Effects of Age, Sex, and Motor Ability Level on Balance Capabilities in Children with Cerebral Palsy GMFCS Levels I, II, III and Typical Development using the Pediatric Balance Scale

Purpose: Explore effects of age, sex, and motor ability level on balance capabilities in preschoolers with and without Cerebral Palsy (CP). Method: PBS was administered to 477 children 24 through 59 months: 258 with typical development (TD) and 219 with CP GMFCS levels I, II and III. Results: 3-way ANOVA indicated PBS scores were significantly affected by age (F4,437=26.95, p Conclusion: Children with TD outperformed children with CP GMFCS level I 36-59 months and children with CP GMFCS levels II and III 24-59 months. Expected performance values for children with TD and children with CP, ages 24-59 months, at GMFCS levels I, II and III are provided

Embedding Play to Enrich Physical Therapy

Play is an active process by which an individual is intrinsically motivated to explore the self, the environment, and/or interactions with another person. For infants and toddlers, engaging in play is essential to support development across multiple domains. Infants and toddlers with or at risk of motor delays may demonstrate differences in play or challenges with engaging in play activities compared to typically developing peers. Pediatric physical therapists often use play as a modality to engage children in therapeutic assessment and interventions. Careful consideration of the design and use of physical therapy that embeds play is needed. Following a 3-day consensus conference and review of the literature, we propose physical therapy that embeds play should consider three components; the child, the environment, and the family. First, engage the child by respecting the child’s behavioral state and following the child’s lead during play, respect the child’s autonomous play initiatives and engagements, use activities across developmental domains, and adapt to the individual child’s needs. Second, structure the environment including the toy selection to support using independent movements as a means to engage in play. Allow the child to initiate and sustain play activities. Third, engage families in play by respecting individual family cultures related to play, while also providing information on the value of play as a tool for learning. Partner with families to design an individualized physical therapy routine that scaffolds or advances play using newly emerging motor skills