PURPOSE: This study explores the pre-operative situation of children accepted for multilevel surgery for cerebral palsy (CP) and their parents. METHODS: Eight ambulatory children with varied severity of spastic CP and their parents were included. Qualitative, semi-structured interviews were carried out separately with the children and parents. RESULTS: Everyday life of the children and their parents was vulnerable. The degree to which children strived for social acceptance and normality increased their pain. Deteriorating physical capacity resulted in pain and fatigue and was the parents' and children's main motivation for the operation. Although the parents were ambivalent to the operation they mediated hope and cautious optimism about a better life for their children. CONCLUSION: Parents' and children's experiences imply the need for improvements to ensure facilitation for disabled children in schools and all levels of the health service, equality of communication and awareness-raising in the pre-operative phase of multilevel surgery.
The assessment of growth and body composition is challenging in children with cerebral palsy (CP). The aim of this study was to compare clinical assessments of body composition with measurements obtained using dual-energy X-ray absorptiometry (DXA) in this population.
Knee height, weight, and triceps and subscapular skinfold thickness (SFT) were measured in 47 children with CP (age range 8-18y; 18 females, 29 males). Height was estimated from knee height, and used to calculate body mass index (BMI). Using SFT measurements, body fat percentage was calculated by standard ('Slaughter') and CP-modified ('Gurka') equations and compared with results obtained using DXA.
Children with severe gross motor function impairments (Gross Motor Function Classification System [GMFCS] level III or IV) exhibited stunted growth and had higher fat percentages and lower lean body mass than children classified in GMFCS level I or II. In 10 children classified as 'thin' according to their BMI (five of whom were assigned thinness grade of 2 or lower), percentage of body fat, as determined by DXA, was normal or high. The Slaughter equations significantly underestimated body fat percentages, whereas the precision of the CP-modified Gurka equations was excellent.
In this study, children with CP and severe motor impairments displayed stunted growth, but were not undernourished. Relying solely upon BMIs may be misleading in children with CP. Therefore, clinicians should be encouraged to measure SFT and to calculate body fat percentages using the CP-modified version of the Slaughter equation.
Comment In: Dev Med Child Neurol. 2015 Sep;57(9):793-425827683
The purpose of this study was to examine the relationship between goal achievement measured by the Canadian Occupational Performance Measure (COPM) and child, goal, and intervention factors. Participants were 41 preschool children with cerebral palsy (CP) who were in the context-focused therapy arm of a randomized controlled trial. Factors including child age, Gross Motor Function Classification System (GMFCS) level, type and complexity of goals, and intervention strategies were analyzed. Children made large, positive mean changes on the COPM over 6 months (Performance = 3.8, SD = 1.9; Satisfaction = 4.3, SD 4.3) with younger children showing greater change. The COPM scores had low to moderate correlations with change on the Pediatric Evaluation of Disability Inventory and the Gross Motor Function Measure (GMFM-66). Regression analysis indicated that age, but not GMFCS level influenced COPM change scores. Goal complexity and intervention strategies were not significantly related to COPM change scores. The results provide support for using the COPM as an individualized measure of change in young children with CP receiving intervention.
We developed a new type of pelvic stabilization device designed to help children be better positioned in their wheelchairs. The device replaces a wheelchair lap belt by providing firm anterior pelvic support for the seated user. We developed, tested, and evaluated instructions for installing, fitting, and using the device to study its performance in "typical" community settings in Toronto, Canada. Each of four therapists worked with a local rehabilitation technology supplier to install and fit the device onto an adaptive wheelchair seating system for a young child between 5 and 10 years of age. Therapists assessed the system's positioning effects, and children used the system for 12-14 days. Following the trials, therapists, parents, and children reported their levels of satisfaction with the performance of the device as compared with the children's existing lap belts. Participating therapists confirmed that the device provided better anterior pelvic stability for their clients. Parents felt that their children were generally better positioned in their seats and thought that the device was easy to use. Children had similar perspectives. Suppliers were confident that they could readily install the devices following the instructions provided. Based on the opinions of participants and our inspection of the installed devices, we proposed that minor modifications be made to the product design and instructions for installation, fitting, and use.
This study documents the development of hand and upper-extremity function in young children who have cerebral palsy (CP) with upper-extremity involvement using longitudinal data. Assessments of hand function and the quality of upper-extremity movement were conducted on 29 males and 22 females (mean age 36.2 months, SD 10.6; age range 16 to 60 months at baseline) and on four other occasions over 10 months. Linear mixed effects modeling was used to estimate average developmental curves and the degree of individual differences in the patterns of development which were conditional on the body-site distribution of CP and severity of impairments. Results indicate that hand function in this clinical population develops differently from overall upper-extremity skills with declines in function in upper-extremity skills being more common and pronounced among older children. However, there is substantial interindividual variation. Distribution of CP and severity of impairments were significant predictors of development. Results are discussed in terms of their clinical implications.
Erratum In: Dev Med Child Neurol. 2003 Sep;45(9):644
BACKGROUND: The development of spasticity with age in children with cerebral palsy (CP) has, to our knowledge, not been studied before. In 1994, a register and a health care program for children with CP in southern Sweden were initiated. In the programme the child's muscle tone according to the modified Ashworth scale is measured twice a year until six years of age, then once a year. We have used this data to analyse the development of spasticity with age in a total population of children with cerebral palsy. METHODS: All measurements of muscle tone in the gastrocnemius-soleus muscle in all children with CP from 0 to 15 years during the period 1995-2006 were analysed. The CP subtypes were classified according to the Surveillance of Cerebral Palsy in Europe network system. Using these criteria, the study was based on 6218 examinations in 547 children. For the statistical analysis the Ashworth scale was dichotomized. The levels 0-1 were gathered in one category and levels 2-4 in the other. The pattern of development with age was evaluated using piecewise logistic regression in combination with Akaike's An Information Criterion. RESULTS: In the total sample the degree of muscle tone increased up to 4 years of age. After 4 years of age the muscle tone decreased each year up to 12 years of age. A similar development was seen when excluding the children operated with selective dorsal rhizotomy, intrathecal baclofen pump or tendo Achilles lengthening. At 4 years of age about 47% of the children had spasticity in their gastro-soleus muscle graded as Ashworth 2-4. After 12 years of age 23% of the children had that level of spasticity. The CP subtypes spastic bilateral and spastic unilateral CP showed the same pattern as the total sample. Children with dyskinetic type of CP showed an increasing muscle tone up to age 6, followed by a decreasing pattern up to age 15. CONCLUSION: In children with CP, the muscle tone as measured with the Ashworth scale increases up to 4 years of age and then decreases up to 12 years of age. The same tendency is seen in all spastic subtypes. The findings may have implications both for clinical judgement and for research studies on spasticity treatment.
Few comprehensive systems are available for assessing and reporting the overall health of preschool children.
(i) To develop a multi-dimension health status classification system (HSCS) to describe pre-school (PS) children 2.5-5 years of age; (ii) to report reliability and validity of the newly developed measure.
Existing systems (Health Utilities Index, Mark 2 and 3) were adapted for application to a pre-school population. The new system was tested for acceptability, validity and reliability.
Three cohorts of children and their parents from Canada and Australia were utilized: Cohort 1 (MAC)-101 3-years old very low birthweight (VLBW,
To evaluate the short-term impact of 2 adaptive seating devices on the activity performance and satisfaction with performance of children with cerebral palsy (CP), as observed by their parents.
Homes of participating families.
Parents and their children (N=30), mean age of 4 years 6 months, with Gross Motor Function Classification System levels III and IV CP participated.
Two special purpose seating devices: one for sitting support on the floor or on a chair, the other for postural control on a toilet.
Changes in activity performance and satisfaction were measured through parent ratings on the Canadian Occupational Performance Measure. We interviewed parents biweekly using the Home Activity Log to describe and explain their child's activity performance during the 3 study phases.
Parents identified 139 activity performance issues (4.6 a child): 58.3% in self-care, 34.5% in play, and 7.2% in socialization and quiet recreation. We used paired t tests to demonstrate significantly improved performance and satisfaction with self-care and play activities when the children used the adaptive seating devices during the 6-week intervention phase. Three themes arose from the analysis of comments made by parents during Home Activity Log interviews: adaptive seating can have an enabling influence on the child, caregivers and family find adaptive seating useful, and the adaptive seating devices did not meet every family's needs.
Parents reported that their young children with CP were more able to engage in self-care and play activities when using specific adaptive seating devices in their home. Parents indicated that their child's activity performance decreased after the seating devices were removed from their homes.
To examine associations between interventions and child characteristics; and enhanced gross motor progress in children with cerebral palsy (CP).
Prospective cohort study based on 2048 assessments of 442 children (256 boys, 186 girls) aged 2-12 years registered in the Cerebral Palsy Follow-up Program and the Cerebral Palsy Register of Norway. Gross motor progress estimates were based on repeated measures of reference percentiles for the Gross Motor Function Measure (GMFM-66) in a linear mixed model. Mean follow-up time: 2.9 years.
Intensive training was the only intervention factor associated with enhanced gross motor progress (mean 3.3 percentiles, 95% CI: 1.0, 5.5 per period of =3 sessions per week and/or participation in an intensive program). Gross motor function was on average 24.2 percentiles (95% CI: 15.2, 33.2) lower in children with intellectual disability compared with others. Except for eating problems (-10.5 percentiles 95% CI: -18.5, -2.4) and ankle contractures by age (-1.9 percentiles 95% CI: -3.6, -0.2) no other factors examined were associated with long-term gross motor progress.
Intensive training was associated with enhanced gross motor progress over an average of 2.9 years in children with CP. Intellectual disability was a strong negative prognostic factor. Preventing ankle contractures appears important for gross motor progress.