Parents\u27 Experiences and Perceptions when Classifying their Children with Cerebral Palsy: Recommendations for Service Providers.

AIMS: This study investigated the experiences and perceptions of parents of children with cerebral palsy (CP) when classifying their children using the Gross Motor Function Classification System (GMFCS), the Manual Ability Classification System (MACS), and the Communication Function Classification System (CFCS). The second aim was to collate parents\u27 recommendations for service providers on how to interact and communicate with families. METHODS: A purposive sample of seven parents participating in the On Track study was recruited. Semi-structured interviews were conducted orally and were audiotaped, transcribed, and coded openly. A descriptive interpretive approach within a pragmatic perspective was used during analysis. RESULTS: Seven themes encompassing parents\u27 experiences and perspectives reflect a process of increased understanding when classifying their children, with perceptions of utility evident throughout this process. Six recommendations for service providers emerged, including making the child a priority and being a dependable resource. CONCLUSIONS: Knowledge of parents\u27 experiences when using the GMFCS, MACS, and CFCS can provide useful insight for service providers collaborating with parents to classify function in children with CP. Using the recommendations from these parents can facilitate family-provider collaboration for goal setting and intervention planning

Ease of Caregiving for Children: Re-Validation of Psychometric Properties of the Measure for Children with Cerebral Palsy up to 11 Years of Age.

PURPOSE: To re-validate stability and hierarchal ordering of items, test-retest reliability, and construct validity of the Ease of Caregiving for Children measure for parents of children with cerebral palsy (CP) up to 11 years of age. METHODS: Participants were 613 parents of children with CP between 1.5 and 11 years of age. Parents completed Ease of Caregiving for Children and both parents and therapists classified children\u27s levels of gross motor, manual and communication functions. RESULTS: Rasch analysis indicated acceptable fit of items, stable item calibration, and logical ordering of items by difficulty. Test-retest reliability was good: ICC = 0.69 (95% CI 0.52-0.81). For construct validity, ease of caregiving was higher for parents of children with higher functioning compared to parents of children with lower functioning, p \u3c .001. CONCLUSIONS: Ease of Caregiving for Children is a unidimensional, reliable and valid measure of physical caregiving for parents of children with CP 1.5-11 years

Understanding participation of children with cerebral palsy in family and recreational activities.

AIMS: The primary aim of this study was to determine the effect of age, sex, gross motor, manual ability, and communication functions on the frequency and enjoyment of children\u27s participation in family and recreational activities. The secondary aim was to determine the relationships between motor and communication functions and participation. METHODS: Participants were 694 children, 1.5-12 years old, with cerebral palsy (CP) and their parents across the US and Canada. Parents rated children\u27s frequency and enjoyment of participation using the Child Engagement in Daily Life measure. Parents and therapists identified children\u27s level of function using Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), and Communication Function Classification System (CFCS). RESULTS: Differences in frequency and enjoyment of participation were found based on children\u27s GMFCS, MACS, and CFCS levels but not age or sex. Children with higher gross motor, manual, and communication functions had higher frequency and enjoyment of participation, compared to children with lower functions. Frequency of participation was associated with GMFCS and CFCS levels whereas enjoyment of participation was only associated with CFCS level. IMPLICATIONS: Knowledge of child\u27s gross motor, manual ability, and communication functions of children with CP is important when setting goals and planning interventions for participation

Stability of the Gross Motor Function Classification System, Manual Ability Classification System, and Communication Function Classification System.

AIM: To determine the stability of the Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), and Communication Function Classification System (CFCS) over 1-year and 2-year intervals using a process for consensus classification between parents and therapists. METHOD: Participants were 664 children with cerebral palsy (CP), 18 months to 12 years of age, one of their parents, and 90 therapists. Consensus between parents and therapists on level of function was ≥92% for the GMFCS, MACS, and CFCS. A linearly weighted kappa coefficient of ≥0.75 was the criterion for stability. RESULTS: Kappa coefficients varied from 0.76 to 0.88 for the GMFCS, 0.59 to 0.73 for the MACS, and 0.57 to 0.77 for the CFCS. For children younger than 4 years of age, level of function did not change for 58.2% on the GMFCS, 30.3% on the MACS, and 39.3% on the CFCS. For children 4 years of age or older, level of function did not change for 72.3% on the GMFCS, 49.1% on the MACS, and 55% on the CFCS. INTERPRETATION: The findings support repeated classification of children over time. The kappa coefficients for the GMFCS are attributed to descriptions of levels for each age band. Consensus classification facilitates discussion between parents and professionals that has implications for shared decision-making. WHAT THIS PAPER ADDS: The findings support repeated classification of children over time. Stability was higher for the Gross Motor Function Classification System than the Manual Ability Classification System and Communication Function Classification System. The function of younger children was more likely to be reclassified. Percentage agreement between parents and therapists using consensus classification varied from 92% to 97%. The intraclass correlation coefficient overestimated stability compared with the weighted kappa coefficient

Self-Care Trajectories and Reference Percentiles for Children with Cerebral Palsy.

Aims: To create longitudinal trajectories and reference percentiles for performance in self-care of children with cerebral palsy (CP). Methods: Participants were 708 children with CP, 18 months through 11 years of age and their parents residing in 10 regions across Canada and the United States. Gross Motor Function Classification System (GMFCS) levels were determined by consensus between parents and therapists. Parents\u27 completed the Performance in Self-Care domain of the Child Engagement in Daily Life Measure two to five times at 6-month intervals. Nonlinear mixed-effects models were used to create longitudinal trajectories. Quantile regression was used to construct cross-sectional reference percentiles. Results: The trajectories for children in levels I, II, and III are characterized by an average maximum score between 79.6 (level I) and 62.8 (level III) and an average attainment of 90% of the maximum score between 7 and 9 years of age. The trajectories for children in level IV and V show minimal change over time. Extreme variation in performance among children of the same age and GMFCS level complicate interpretation of percentile change of individual children. Conclusion: The findings are useful for monitoring self-care of children with CP and evaluating change for children in GMFCS levels I-III

Performance of physical activities by adolescents with cerebral palsy

Physical Therapy, 87(1): pp. 77-87.Background and Purpose Mobility and self-care are important considerations for successful transition of adolescents with cerebral palsy to adulthood. The purpose of this study was to characterize performance of physical activities from the perspective of adolescents themselves. Subjects The subjects were 156 adolescents with cerebral palsy, 11.6 to 17.7 years of age. Methods A therapist completed the Gross Motor Function Classification System (GMFCS). Adolescents completed the Activities Scale for Kids–Performance Version (ASKp) twice over a 1-year period. Results A repeated-measures analysis of variance indicated a main effect for GMFCS level. The main effect for time and the GMFCS level time interaction were not significant. Post hoc comparisons indicated that ASKp scores differed among all GMFCS levels. Discussion and Conclusion Performance of physical activities by adolescents with cerebral palsy differed based on GMFCS level and did not change over 1 year. The ASKp scores of adolescents in levels II through V suggest the need for physical assistance at times throughout the day. The results have implications for the role of the physical therapist in transition planning

Longitudinal Changes in Physical Caregiving for Parents of Children with Cerebral Palsy.

Aims: To determine changes in physical caregiving for parents of children with cerebral palsy (CP) over a two-year period based on children’s gross motor function level and age. Methods: 153 parents of children with CP rated their physical caregiving using the Ease of Caregiving for Children three times over two years. Parents and assessors classified children’s gross motor function using the Gross Motor Function Classification System (GMFCS). Physical caregiving was compared at three test times among parents of children grouped by GMFCS level (I, II–III, and IV–V) and age (1.7–5.9 and 6–11 years) using a three-way mixed ANOVA. Results: Among all analyses, a two-way interaction was found between children’s GMFCS level and test time on ease of caregiving, p \u3c 0.01. Change over two-year period was found for parents of children in level I and II–III, p \u3c 0.01, but not parents of children in levels IV–V. At each test time, parents of children in level I reported the greatest ease of caregiving followed by parents of children in levels II–III, and levels IV–V, who reported the lowest ease of caregiving, p \u3c 0.001. Conclusions: Findings support evaluation and monitoring of physical caregiving for parents of children with CP over time

Quality of life among adolescents with cerebral palsy: what does the literature tell us?

Developmental Medicine & Child Neurology, 49(3): pp. 225-231.This review describes trends in quality of life (QOL) and health-related quality of life (HRQOL) among adolescents with cerebral palsy (CP). Twenty original articles were identified by a structured search of multiple databases and grouped by design. Categories included descriptive crosssectional studies (n=8), measurement validation studies (n=9), and exploratory qualitative studies (n=3). Several trends were apparent. First, individuals with CP are reported to have decreased QOL and HRQOL compared with a normative population in some but not all areas of well-being. Second, functional status measures such as the Gross Motor Function Classification System are reliable indicators of variations in physical function, but do not correlate consistently with psychosocial well-being. Third, although adolescents with CP have different life issues than adults or children, limited research on factors associated with QOL and HRQOL has been described for this age range. We recommend that clinicians and researchers interested in assessing well-being among adolescents with CP include participants from across the spectrum of motor impairment, allow adolescents to self-report whenever possible, and assess adolescents independently, rather than including them with individuals from other age groups or clinical populations

Gastrocnemius-Soleus Muscle Tendon Unit Changes Over the First 12 Weeks of Adjusted Age in Infants Born Preterm

Background and Purpose: Differences in the gastrocnemius-soleus muscle and tendon have been documented shortly after birth in infants born preterm compared with infants born at term. Knowledge of muscle tendon unit lengths at term age to 12 weeks of age in infants born preterm may be useful in understanding motor development. Participants and Method: Gastrocnemius-soleus muscle tendon unit lengths were compared at term age, at 6 weeks of age, and at 12 weeks of age (preterm adjusted age) in 20 infants born full term and 22 infants born preterm. Results: Significant differences were found between the 2 groups on taut tendon, relaxed muscle length (AO); taut tendon, stretched muscle length (AMax); and muscle stretch (AO to AMax). Infants born preterm demonstrated measures of AO and AMax in positions of greater plantar flexion compared with infants born full term. Significant differences in measurements of AO were found between term age and 12 weeks of age, indicating that the tendon lengthens during this period for both groups. Discussion and Conclusion: These results provide knowledge of musculoskeletal development of the gastrocnemius-soleus muscle and tendon. Differences in musculoskeletal measurements are consistent with uterine confinement in the last weeks of full-term gestation. These findings have implications when examining the musculoskeletal system in infants born preterm who are demonstrating functional changes