Children In Gross Motor Function Classification System Levels Research Articles

Caregiver perspectives on powered mobility devices and participation for children with cerebral palsy in Gross Motor Function Classification System level V.

To describe caregiver experiences, perceptions, and device preferences between a modified ride-on car (MROC) and an Explorer Mini, including perceived changes in participation, barriers, and benefits for young children with cerebral palsy (CP) classified in Gross Motor Function Classification System (GMFCS) level V. A subset of data were analyzed from a larger multisite study. Semi-structured interviews were conducted with 10 caregivers of children with CP in GMFCS level V across a 16-week trial with two mobility devices. Each interview was audio-recorded, transcribed verbatim, and analysed using constant comparison methods. Seven of 10 caregivers preferred the Explorer Mini over the MROC. Four themes emerged. One related to the perceived benefits and barriers of each device (ease and convenience is essential) and three related to perceived changes in participation: (1) autonomy enacted through mobility; (2) belonging and being present; and (3) participation recognized as an area of growth. Despite limited consideration of powered mobility for this population, caregivers of children in GMFCS level V reported similar benefits and barriers compared to children in other GMFCS levels shown in the literature. Particularly, caregivers perceived positive changes in their child's participation and recognized the ability for continued improvements in participation when using powered mobility. Children with cerebral palsy classified in Gross Motor Function Classification System level V are often excluded from powered mobility use and research. Despite this, caregivers reported positive experiences for their children. Caregivers felt that participation in powered mobility led to increased autonomy and overall sense of inclusion and belonging for their children. Most caregivers preferred the Explorer Mini over the modified ride-on car but recognized that both devices had benefits and barriers to use.

Survival of South African children with cerebral palsy.

The South African (SA) public healthcare sector has experienced a surge in birth injury claims in recent years, particularly in respect of cerebral palsy (CP). The lump sum settlements in these matters are a function of the expected survival curve of the individual concerned. It is known from international studies that the life expectancy of children with CP is shorter than that of the general population, and depends on the pattern and severity of their disabilities. However, empirical estimates of survival for children with CP in SA are not available. To construct survival curves according to the pattern of gross motor skills for CP children in SA and compare these with international studies. We collected data on mortality and functional status for 339 CP childrenon whose behalf claims for medical negligence had been instituted. Motor disabilities were classified according to the five-level Gross Motor Function Classification System (GMFCS). Children who were unable to walk unaided were further classified according to more basic motor skills, including the ability to lift their heads or chests in the prone position, rolling and sitting. Mortality rates were calculated and survival curves were estimated using the Kaplan-Meier method. No deaths were observed among 119 children in GMFCS levels I - IV. Among the 220 children in GMFCS V, there were 20 observed deaths. The proportions surviving to ages 10 and 15 years were 85% (standard error (SE) 5%) and 55% (SE 11%), respectively. The former is comparable to what has been reported for children in California and Sweden, but the survival to age 15 is lower. Among 82 children who could not lift their heads in the prone position, there were 11 observed deaths for a mortality rate of 48.5 (95% confidence interval (CI) 24.2 - 86.9) deaths per 1 000 person-years. Among 72 children who could lift their heads but not their chests, there were 6 observed deaths for a mortality rate of 33.5 (95% CI 12.3 - 73.0) deaths per 1 000 person-years. These mortality rates are 22% and 15% higher than the corresponding figures documented for children with comparable abilities and disabilities in California. Life expectancy of children with CP in SA is lower than that of children with comparably severe disabilities in high-income countries.

Nutritional status of children with cerebral palsy attending rehabilitation centers.

To describe the nutritional status of children with cerebral palsy (CP) from rehabilitation and therapeutic centers in Argentina, and to analyze their risk of undernutrition based on their Gross Motor Function Classification System (GMFCS) level. This was a cross-sectional study with data collected from 321 children (196 males, 125 females) with CP age 2 to 19 years (mean age 9y 3mo, SD 4y 5mo) from 17 rehabilitation and therapeutic centers in five Argentine provinces. Nutritional status was defined by height, weight, and body mass index for age z-scores using World Health Organization growth charts. Odds ratios were used to evaluate the association between GMFCS level and nutritional status. Of the children with CP studied, 52.4% were in GMFCS levels IV and V. Regarding the nutritional status, 41.7% were normal, 19.0% had moderate undernutrition, 33.9% severe undernutrition, 2.5% overweight, and 2.8% obese. When compared to those in GMFCS levels I to III, the odds of children in GMFCS levels IV and V having moderate undernutrition are four times greater and the odds of having severe undernutrition are 14 times greater. There is a high prevalence of undernutrition associated with CP (GMFCS levels IV and V) among children in rehabilitation and therapeutic centers in Argentina. Risk of severe undernutrition increases with increased motor compromises.

Association between pelvic obliquity and scoliosis, hip displacement and asymmetric hip abduction in children with cerebral palsy: a cross-sectional registry study

BackgroundPelvic obliquity (PO) is common in individuals with cerebral palsy (CP). The prevalence of PO in a population of children with CP and its associations with scoliosis, hip displacement and asymmetric range of hip abduction were analysed.MethodsOver a 5-year period all pelvic radiographs from the Swedish surveillance programme for CP and the recorded data for scoliosis and hip abduction in children from southern Sweden at Gross Motor Function Classification System (GMFCS) levels II–V were analysed. PO and hip displacement calculated as migration percentage (MP) were measured on supine pelvic radiographs and compared with presence of scoliosis and side difference in hip abduction. Statistical analyses comprised chi-squared and binominal testing.ResultsIn total, 337 children were analysed, of whom 79 had a PO of ≥5°. The proportion of children with PO increased from 16% in GMFCS level II to 34% in level V. Scoliosis combined with PO was reported in 38 children, of whom 34 (89%, 95% confidence interval [CI] 80–99%) had the convexity opposite to the high side of the PO. Asymmetric abduction with PO was reported in 45 children, of whom 40 (89%, CI 79–99%) had reduced abduction on the high side of the PO. Asymmetric MP of ≥5% with PO was seen in 62 children, of whom 50 had higher MP on the high side of the PO (81%, CI 71–90%). Children in GMFCS levels II–IV more often had isolated infra-pelvic association with PO (47% versus 19% in GMFCS V, P = 0.025), while combined supra- and infrapelvic association was more common in GMFCS level V (65% versus 30% in GMFCS II–IV, P = 0.004). Isolated infrapelvic or no association was seen in 74% of children ≤10 years of age while 76% of children ≥11 years old had suprapelvic or combined supra- and infrapelvic association with PO (P < 0.001).ConclusionsThere was a strong association between the high side of the PO and the side of scoliosis, highest MP, and lowest range of abduction when PO was measured in supine position. PO was more often associated with infrapelvic factors. PO was seen in young children indicating the need for early awareness of this complication.

Walking Performance, Physical Activity, and Validity of the Early Activity Scale for Endurance in Young Children with Cerebral Palsy

Aims To describe the walking performance and physical activity of children with cerebral palsy (CP) by Gross Motor Function Classification System (GMFCS) level, age, sex, and geographical location; and, to examine the concurrent validity of the 4-item Early Activity Scale for Endurance (EASE) to walking performance and physical activity scores. Methods Seventy-nine children with CP participated. Parents completed the 4-item EASE. All children wore an Actigraph monitor (n = 79), and children in GMFCS levels I – III also wore a StepWatch monitor (n = 50), for seven days. Results Only GMFCS level yielded significant differences in average strides taken per day, in strides per day taken faster than 30 strides per minute, in average physical activity counts per minute, and in minutes per day spent in moderate to vigorous physical activity. The 4-item EASE findings were moderately correlated with average physical activity counts per minute (.61, p< .001) and minutes per day spent in moderate to vigorous physical activity (.62, p < .001). Conclusions GMFCS level is predictive of both walking performance and physical activity in children with CP. The 4-item EASE may provide a quick and valid way to monitor physical activity in children with CP.

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’ 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.

Commentary on “Validity of the Early Activity Scale for Endurance and the 6-Minute Walk Test for Children With Cerebral Palsy”

“How should I apply this information?” This study provides descriptive and validity data for the Early Activity Scale for Endurance (EASE) in a cohort of children with cerebral palsy (CP) and highlights the importance of endurance for overall physical activity and participation in meaningful daily activities. The EASE is a useful tool for discussion with parents regarding their children's endurance during daily activities. This offers a clinical advantage over a capacity measure such as the 6-minute walk test (6MWT) or other complicated laboratory-based tools. The EASE is designed to capture endurance information for young children and those with limited or no walking, which may increase its clinical utility. Younger participants had lower EASE scores (lower endurance capacity) as well as shorter 6MWT distances, which could be meaningful to better understand endurance trends in CP. “What should I be mindful about when applying this information?” Therapists should consider the study age range (<12 years) and clinical population (only CP). The EASE is designed for use with children at all Gross Motor Function Classification System (GMFCS) levels; however, this study did not provide a comparison endurance measure for those in GMFCS levels IV and V to establish convergent validity. EASE scores were significantly lower for children in GMFCS levels IV and V; however, study results were unable to discriminate actual endurance deficits versus perceived endurance deficits due to limitations in self-initiated movement and mobility in these specific children. Therefore, therapists should interpret EASE outcomes cautiously for children in GMFCS levels IV and V. Continued psychometric evaluation of the EASE is warranted to establish responsiveness to measure endurance changes over time. The authors state that the EASE likely measures a different construct of endurance capacity from walking; however, further research is needed to determine how EASE results correlate with specific motor functions (other than walking) and participation in daily activities at home, school, and community settings. Helen Carey, PT, DHSc, PCS Kettering College Kettering, Ohio Jessica Lewis, PT, DPT, PCS Nationwide Children's Hospital Columbus, Ohio

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

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. 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. The design was a longitudinal cohort study. 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. 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 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. 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.

Longitudinal trajectories and reference centiles for the impact of health conditions on daily activities of children with cerebral palsy.

First, to describe the impact of health conditions on daily activities over time in children with cerebral palsy (CP) and to create age-specific reference centiles. Second, to determine the amount of change typical over a 1-year period, across Gross Motor Function Classification System (GMFCS) levels. A prospective, cohort design, with five assessments over 2 years, involved 708 children with a confirmed diagnosis of CP participating in the On Track Study (396 males, 312 females; mean age 6y [SD 2y 7mo]; range 18mo-12y at first assessment; 32.1% in GMFCS level I, 22.7% in GMFCS level II, 11.2% in GMFCS level III, 18.2% in GMFCS level IV, 15.7% in GMFCS level V). The impact of health conditions on daily activities was assessed using the Child Health Conditions Questionnaire. Data were analyzed using mixed-effects models and quantile regression. Linear longitudinal trajectories describe the relatively stable impact of health conditions over time for each functional level for children aged 2 years to 12 years, with the lowest scores (least impact) in GMFCS level I and the highest scores (highest impact) in GMFCS level V. Centiles were created for children in each GMFCS level. A system to interpret the magnitude of change over time in centiles was developed. Longitudinal trajectories of co-occurring health conditions assist with understanding children's prognoses. Centiles assist in understanding a child's experience relative to children in similar GMFCS levels. Guidelines are provided to determine if children are progressing 'as expected', 'better than expected' or 'more poorly than expected' in regard to the impact of health conditions on daily activities. For children with cerebral palsy, the mean impact of health conditions on daily activities is relatively stable. Significant intraindividual and interindividual variability for the impact of health conditions exists, which complicates prognosis. Centiles enable interpretation of the impact of health conditions relative to Gross Motor Function Classification System level.

Caregiver knowledge and preferences for gross motor function information in cerebral palsy.

To determine caregiver knowledge and preferences for gross motor information and examine differences across Gross Motor Function Classification System (GMFCS) levels. A questionnaire was developed. Respondents reported GMFCS knowledge, preference for knowledge, and experience with GMFCS and motor curve information. In total, 303 caregivers of children with cerebral palsy (CP) (GMFCS level I: 22%; GMFCS level II: 16%; GMFCS level III: 15%; GMFCS level IV: 23%; GMFCS level V: 24%) completed the questionnaire. Forty-five per cent of caregivers knew the GMFCS level at survey, and only 31% knew how their child's motor development compared with others of similar age and level. Caregiver education level was associated with knowledge (p<0.001). Most prefer discussing motor development with a therapist. Of caregivers who knew their child's GMFCS level at survey, 83% reported it would be helpful to revisit the topic over time. Compared with GMFCS level IV and V, caregivers of children in GMFCS levels I to III preferred to learn at the same time as CP diagnosis, (p=0.04) and were more likely to report having received visual aids (p=0.04). Caregivers of children in GMFCS levels IV and V found it more difficult to learn their child's level (p<0.001) versus those caring for children of GMFCS levels I to III, and reported seeing pictures with descriptions more informative (p=0.03). Caregivers of children with CP may not know GMFCS and motor curve information, and vary in experience and preferences for this information. Fewer than half of caregivers of children with cerebral palsy (CP) know their child's Gross Motor Function Classification System level. Most want to know how their child's function compares to other children with CP. The majority of caregivers would like to revisit the topic over time. Caregivers want to discuss gross motor information with the therapist and doctor.

Severity of cerebral palsy and likelihood of adverse events after botulinum toxin A injections.

To determine the incidence of common adverse events after botulinum toxin A (BoNT-A) injections in children with cerebral palsy (CP) and to identify whether the severity of CP influences the incidence of adverse events. This was an observational study of patients attending a BoNT-A clinic at a tertiary paediatric hospital (2010-2014). Data examined included procedural adverse events at the time of injection and at follow-up. Systemic adverse events were defined as lower respiratory tract illnesses, generalized weakness, dysphagia, and death. Severity of CP was categorized by the Gross Motor Function Classification System (GMFCS). The relationships between GMFCS and adverse events were analysed using negative binomial regression models. In total, 591 children underwent 2219 injection episodes. Adverse events were reported during the procedure (130 [6%] injection episodes) and at follow-up (492 [22%] injection episodes). There were significantly increased rates of systemic adverse events in injection episodes involving children in GMFCS level IV (incidence rate ratio [IRR] 3.92 [95% confidence interval] 1.45-10.57]) and GMFCS level V (IRR 7.37 [95% confidence interval 2.90-18.73]; p<0.001). Adverse events after BoNT-A injections are common but mostly mild and self-limiting. Children in GMFCS levels IV and V are at increased risk of systemic adverse events. The relationship between CP severity and BoNT-A adverse events is complex and further research is required to better understand this relationship. Adverse events reported at the time of botulinum toxin A injection occurred in 6% of injection episodes. Adverse events were reported at follow-up in 22% of injection episodes. Children in Gross Motor Function Classification System (GMFCS) levels IV and V have increased rates of systemic adverse events. Children in GMFCS levels IV and V report less local weakness and pain.

Impact of child and family characteristics on cerebral palsy treatment.

The aim of the study was to describe the relationship between the child's and family's characteristics and the most common treatment modalities in a national population-based sample of 8- to 15-year-old children with cerebral palsy. A cross-sectional study, based on the Danish Cerebral Palsy Registry. The parents of 462 children answered a questionnaire about their child's treatment and the family's characteristics (living with a single parent, having siblings, living in a city, parental education level). Descriptive and logistic regression analyses were performed for every treatment modality, stratified by Gross Motor Function Classification System (GMFCS) level. An IQ below 85 was associated with weekly therapy in GMFCS level I (adjusted odds ratio [ORadj ] 2.5 [CI 1.1-5.7]) and the use of oral spasmolytics in GMFCS levels III to V (ORadj 3.1 [CI 1.3-7.4]). Older children in GMFCS levels III to V used daily orthoses less frequently (ORadj 0.7 [CI 0.6-0.9] per year). Of all of the family characteristics studied, only the parents' education level had significant associations with more than one treatment modality. A child's cognitive function showed an impact on treatment of the motor impairment in children 8 to 15years of age with cerebral palsy. Parental education level may influence the choice of treatment.

Gastrostomy tube feeding of children with cerebral palsy: variation across six European countries

To compare the prevalence of gastrostomy tube feeding (GTF) of children with cerebral palsy (CP) in six European countries. Data on 1295 children (754 males, 541 females; mean age 5y 11mo, range 11y 2mo, min 6mo, max 11y 8mo) with CP born from 1999 to 2001 were collected from geographically defined areas in six European countries; four of the areas covered the whole country. Distribution of CP was unilateral 37%, bilateral 51%, dyskinetic 8%, and ataxic 4%. Sixty children were classified in Gross Motor Function Classification System (GMFCS) levels I and II, 6 in level III and 34 in levels IV and Vas Outcome measures were GTF, age at placement, feeding difficulties and the children's height and weight for age standard deviation scores (z-scores). The use of GTF among all children with CP was highest in western Sweden (22%, 95% confidence interval [CI] 16-29), and lowest in Portugal (6%, 95% CI 3-10), northern England (6%, 95% CI 3-9) and in Iceland (3%, 95% CI 0-13; p<0.001). The difference between areas was greater among children in GMFCS levels IV and V (non-ambulant); in this group, lower height z-scores were more prevalent in the areas with lower prevalence of GTF. The children's age at placement of gastrostomy also varied between areas (p<0.002). The observed differences in the use of GTF may reflect differences in access to treatment or clinical practice, or both. Our results suggest that the use of GTF may improve growth in height and weight among children with more severely affected gross motor function - the group most likely to have associated feeding difficulties.

Low Weight, Morbidity, and Mortality in Children With Cerebral Palsy: New Clinical Growth Charts

To determine the percentiles of weight for age in cerebral palsy according to gender and Gross Motor Function Classification System (GMFCS) level and to identify weights associated with negative health outcomes. This study consists of a total of 102 163 measurements of weight from 25 545 children with cerebral palsy who were clients of the California Department of Developmental Services from 1988 through 2002. Percentiles were estimated using generalized additive models for location, scale, and shape. Numbers of comorbidities were compared using t tests. The effect of low weight on mortality was estimated with proportional hazards regression. Weight-for-age percentiles in children with cerebral palsy varied with gender and GMFCS level. Comorbidities were more common among those with weights below the 20th percentile in GMFCS levels I through IV and level V without feeding tubes (P < .01). For GMFCS levels I and II, weights below the 5th percentile were associated with a hazard ratio of 2.2 (95% confidence interval: 1.3-3.7). For children in GMFCS levels III through V, weights below the 20th percentile were associated with a mortality hazard ratio of 1.5 (95% confidence interval: 1.4-1.7). Children with cerebral palsy who have very low weights have more major medical conditions and are at increased risk of death. The weight-for-age charts presented here may assist in the early detection of nutritional issues or other health risks in these children.