Lisa Avery

Stability and Decline in Gross Motor Function among Children and Youth with Cerebral Palsy Aged 2 to 21 Years

This paper reports the construction of gross motor development curves for children and youth with cerebral palsy (CP) in order to assess whether function is lost during adolescence. We followed children previously enrolled in a prospective longitudinal cohort study for an additional 4 years, as they entered adolescence and young adulthood. The resulting longitudinal dataset comprised 3455 observations of 657 children with CP (369 males, 288 females), assessed up to 10 times, at ages ranging from 16 months to 21 years. Motor function was assessed using the 66‐item Gross Motor Function Measure (GMFM‐66). Participants were classified using the Gross Motor Function Classification System (GMFCS). We assessed the loss of function in adolescence by contrasting a model of function that assumes no loss with a model that allows for a peak and subsequent decline. We found no evidence of functional decline, on average, for children in GMFCS Levels I and II. However, in Levels III, IV, and V, average GMFM‐66 was estimated to peak at ages 7 years 11 months, 6 years 11 months, and 6 years 11 months respectively, before declining by 4.7, 7.8, and 6.4 GMFM‐66 points, in Levels III, IV, and V respectively, as these adolescents became young adults. We show that these declines are clinically significant.

Rasch analysis of the gross Motor Function Measure: Validating the assumptions of the Rasch model to create an interval-level Measure

OBJECTIVES To describe the Rasch analysis of the Gross Motor Function Measure (GMFM-88) and to demonstrate how the assumptions of unidimensionality, sample-free measurement, and test-free measurement were validated to create an interval level measure. DESIGN Cross-sectional and longitudinal (12-mo) data from a prospective study of motor development in children with cerebral palsy (CP) were used for the analysis. SETTING Motor assessments were completed at 18 childrens ambulatory rehabilitation centers in Ontario, Canada, by pediatric physical therapists trained in the use of the GMFM-88. PARTICIPANTS The first 537 of 682 children enrolled into a longitudinal study of motor development in children with CP. Children had a mean age of 6.43+/-2.75 years (range, 11mo-12y) with varying types and severity of CP. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURE The GMFM-88. RESULTS The Rasch analysis, in conjunction with clinical decisions, identified 66 items from the GMFM-88 that formed a unidimensional measure (GMFM-66). Assumptions of sample-free and test-free measurement were confirmed, and a user-friendly scoring program was developed. CONCLUSIONS The GMFM-66 is an interval-level measure of gross motor function for children with CP; it should improve the scoring, interpretation, and overall clinical and research utility over the original GMFM.

Development and validation of item sets to improve efficiency of administration of the 66-item Gross Motor Function Measure in children with cerebral palsy

Aim  To develop an algorithmic approach to identify item sets of the 66‐item version of the Gross Motor Function Measure (GMFM‐66) to be administered to individual children, and to examine the validity of the algorithm for obtaining a GMFM‐66 score.

The Mediating Role of the Environment in Explaining Participation of Children and Youth With and Without Disabilities Across Home, School, and Community

OBJECTIVE To test the effect of personal and environmental factors on childrens participation across 3 different settings (home, school, community); to ascertain the interrelations between these factors; and to propose and test 3 models, 1 for each setting, using structural equation modeling. DESIGN Survey, cross-sectional study, and model testing. SETTING Web-based measures were completed by parents residing in North America in their home/community. PARTICIPANTS Parents (N=576) of children and youth with and without disabilities, (n=282 and n=294, respectively), ages 5 to 17 years (mean age, 11y 2mo), completed the Participation and Environment Measure for Children and Youth (PEM-CY). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES The PEM-CY measured levels of participation frequency and involvement, as well as environmental barriers and supports of participation, in each of the following 3 settings: home, school, and community. Information about the childs health condition and functional issues was also collected. RESULTS All 3 models fit the data well (comparative fit index, .89-.97) and explained 50% to 64% of the variance of participation frequency and involvement. Environmental barriers and supports served as significant mediators between child/personal factors (income, health condition, functional issues) and participation outcomes, across all models. The effect of the environment was most pronounced, however, in the community setting. CONCLUSIONS Our findings highlight the unique role of the environment in explaining childrens participation across different settings and, therefore, support the development of interventions targeting modifiable environmental factors.

Correlates of decline in gross motor capacity in adolescents with cerebral palsy in Gross Motor Function Classification System levels III to V: an exploratory study

Aim  To explore associations between clinical variables and decline in motor capacity in adolescents with cerebral palsy (CP).

Geographical patterns in the recreation and leisure participation of children and youth with cerebral palsy: A CAPE international collaborative network study

Purpose: To examine geographical variation in the leisure participation of children/youth with cerebral palsy (CP), using Childrens Assessment of Participation and Enjoyment (CAPE) data from Australia, Canada (Ontario and Quebec) and the US. Method: Data from 1076 children/youth ages 6–20 years with CP were included. Analyses examined CAPE diversity scores in activity types as a function of region, age group and Gross Motor Function Classification System (GMFCS) group, controlling for family income, education and child gender. Results: There were only two substantial geographical differences: children/youth from the US took part in the fewest active physical activities; those from Ontario took part in the most self-improvement activities. The youngest age group took part in the most recreational activities, and those in GMFCS level IV/V had the lowest levels of participation in recreational, active physical and self-improvement activities, confirming previous findings. Conclusions: There were more similarities than differences in participation patterns for the three countries.

Child engagement in daily life: a measure of participation for young children with cerebral palsy

Abstract Purpose: The objectives of this study were to determine the: (1) internal consistency and test–retest reliability of the Child Engagement in Daily Life measure; (2) construct validity of the measure (known groups methods), that is, the ability of the measure to discriminate participation in family and recreational activities and self-care among young children of varying age and motor ability and between children with and without cerebral palsy, and (3) stability and hierarchical ordering of the items for young children with CP to devise an interval-level scoring system. Methods: 429 children with CP and their parents and 110 parents of children without CP participated in this methodological study. Parents completed the Child Engagement in Daily Life measure and therapists assessed the childrens gross motor function. Rasch analysis was used to create an interval-level measure. Results: Childrens frequency in and enjoyment of participation in family and recreational activities and self-care varied by age and gross motor ability. Internal consistency of the domains of the measure was high, Cronbach alpha values ranging from 0.86 to 0.91; test–retest for participation in family and recreational activities was acceptable, ICC = 0.70, and in self-care was high, ICC = 0.96. The items in the measure had a good fit and a logical hierarchical ordering. Conclusion: Study results support the validity and reliability of the Child Engagement in Daily Life measure as an assessment of participation in family and recreational activities and self-care for young children with CP. Implications for Rehabilitation Participation in family and recreational activities and self-care for young children with cerebral palsy can be reliably and validly assessed using the Child Engagement in Daily Life measure. Service providers are encouraged to support young childrens participation in family and recreational activities and self-care.

Criterion validity of the GMFM-66 item set and the GMFM-66 basal and ceiling approaches for estimating GMFM-66 scores

The aim of this study was to compare the accuracy of two abbreviated approaches for estimating Gross Motor Function Measure 66 (GMFM‐66) scores against the full GMFM‐66 and to explore their strengths and limitations.

The effectiveness of the Pathways and Resources for Engagement and Participation (PREP) intervention: improving participation of adolescents with physical disabilities

This study examined the effectiveness of the Pathways and Resources for Engagement and Participation (PREP) intervention in improving the participation of adolescents in community‐based activities.

Child‐ and parent‐reported quality of life trajectories in children with epilepsy: A prospective cohort study

To describe the developmental trajectories of quality of life (QoL) in a large cohort of children with epilepsy, and to assess the relative contribution of clinical, psychosocial, and sociodemographic variables on QoL trajectories.