The study aimed to determine whether degree of participation of children with cerebral palsy (CP) is influenced by where they live, as predicted by the social model of disability. Ninety-two per cent children with CP resident in Northern England and born 1991–1996 were entered into the study. Participation was measured by the Lifestyle Assessment Score and its six component domain scores. Regression analysis was used to investigate variations in participation. There were 443 children (265 male, 178 female; mean age 4 years 8 months [SD 1 year 1 month] at time of assessment) in the study. In the regression analysis the following factors remained significant with regard to level of participation: type of CP (167 with hemiplegia, and of those remaining 240 with bilateral spasticity); intellectual impairment (105 with IQ<50, 113 with IQ 50 to 70, and 225 with IQ>70); presence of seizures (115 with active epilepsy); walking disability (114 unable to walk, 81 restricted and needing aids, 186 restricted but unaided, 62 unrestricted); communication problems (61 no formal communication, 51 use alternative formal methods, 126 some delay or difficulty, 205 no communication problems). After adjustment for these factors, there were significant variations with regard to level of participation in the Lifestyle Assessment Score by district of residence. The magnitude of these variations in Lifestyle Assessment Score between districts is similar to that accounted for by severe intellectual impairment. Similar models were obtained for four of the six domain scores. For one of these four, restriction of social interaction, the significant variation between districts was minimally influenced by the underlying type of CP, walking ability, or presence of seizures. Higher levels of participation among children with CP are associated with residence in certain districts. This is not attributable to variations in case-mix or functional capacity of the children. Participation of children with disability is partly a product of their environment.

Physical, social, and attitudinal environment may restrict participation in children with cerebral palsy (CP). Here we discuss existing/possible approaches in order to identify and describe this environment. We used a critical review of evidence from the World Health Organization Literature Review on Environmental Factors; a search of electronic databases; and talked to specialists in order to find unpublished papers and ‘grey’ literature. Both children with disabilities and their parents identified a range of barrier and facilitator factors. These included psychosocial pressures (family, school), financial difficulties, and inadequate public services. Observational studies suggest that building structure, loss of income, and provision of specific equipment have a direct impact on levels of child participation. Some available instruments attempt to capture environmental factors by client survey or objective measurement; most relate to adult contexts, but there are a few child-specific instruments for surveying attitudes of children to peers with disabilities and for observation of the school environment. Defining and measuring potential environmental determinants of participation for children with CP needs further development; and here we propose how this might be done.

Pain frequency and its association with participation, function, and health-related quality of life were evaluated in a sample of 198 children (58% male; mean age 10 years 7 months, SD 3 years 11 months; range 5 to 18 years) with moderate to severe cerebral palsy (CP). Gross Motor Functional Classification System (GMFCS) levels were III to V (23% level III, 23% level IV, 31% level V without a gastrostomy tube, and 23% were level V with a gastrostomy tube). Assessment was carried out using the parent-report Child Health Questionnaire (CHQ) and questions assessing health, medical utilization, and medication use. Pain frequency ranged from ‘none’ to ‘every day’. Eleven percent of parents reported pain almost every day (z score=–0.38, p<0.001). Pain was related to severity of motor impairment and the presence of a gastrostomy; parents of the most severely affected children reported the highest pain frequency (p=0.05). Pain was correlated with school days missed (p=0.03) and days in bed (p=0.01). Children taking gastrointestinal medications were reported to have greater pain frequency (p<0.001). The Parental Impact – Emotional subscale of the CHQ was correlated with reported pain (r=0.38, p<0.001). Pain was frequent in children with moderate or severe CP. Pain was more prevalent with more severe impairment and was associated with educational and social consequences.

The relationships between different levels of severity of ambulatory cerebral palsy, defined by the Gross Motor Function Classification System (GMFCS), and several pediatric outcome instruments were examined. Data from the Gross Motor Function Measure (GMFM), Pediatric Orthopaedic Data Collection Instrument (PODCI), temporal–spatial gait parameters, and oxygen cost were collected from six sites. The sample size for each assessment tool ranged from 226 to 1047 participants. There were significant differences among GMFCS levels I, II, and III for many of the outcome tools assessed in this study. Strong correlations were seen between GMFCS level and each of the GMFM sections D and E scores, the PODCI measures of Transfer and Mobility, and Sports and Physical Function, Gait Velocity, and Oxygen Cost. Correlations among tools demonstrated that the GMFM sections D and E scores correlated with the largest number of other tools. Logistic regression showed GMFM section E score to be a significant predictor of GMFCS level. GMFM section E score can be used to predict GMFCS level relatively accurately (76.6%). Study data indicate that the assessed outcome tools can distinguish between children with different GMFCS levels. This study establishes justification for using the GMFCS as a classification system in clinical studies.

The purpose of this study was to investigate the use of the heart-rate (HR) version of the energy expenditure index (EEIHR) as a proxy for measurement of walking oxygen consumption (VO2) in children with cerebral palsy (CP). Thirteen children (eight males, five females; mean age 11 years 2 months [SD 3 years], age range 6 to 15 years) with hemiplegic CP, participated in this study. The study was conducted over three sessions. During session 1, participants were familiarized with testing procedures and given 5 minutes of treadmill walking practice. In session 2, participants completed three 5-minute walking bouts on the treadmill at 0.67m·s-1 to familiarize themselves with treadmill locomotion. During the final session participants walked at 0.67, 0.89, and 1.12m·s-1 for 5 minutes while gross oxygen consumption (gross VO2; walking VO2/speed), net VO2 ([walking VO2–resting VO2]/speed), and EEIHR ([walking HR–resting HR]/speed) were measured during the last 2 minutes of each bout. Correlational analyses indicated no relationship (p>0.05) between measures of gross VO2 and EEIHR at each speed. Although no association was evident between net VO2 and EEIHR at 0.67 and 0.89m·s-1, a moderate relationship (r=0.64; p<0.05) was present between these variables at 1.12m·s-1. Examination of individual data revealed that most participants displayed an unmatched pattern of response between net VO2 and EEIHR. Our results suggest that caution should be applied when using EEIHR to estimate walking energy expenditure in children with CP.

This study aimed at broadening our insight into ipsi- and contra-lesional control of prehension after unilateral brain damage. Six male adults with hemiparetic cerebral palsy (mean age 17 years 3 months, SD 15 months) performed unrestricted grasping of discs that differed in size (40, 60, and 80mm in diameter) and which were placed at different distances from the participants (150mm and 30mm). A precalibrated Optotrak 3020 system was used for recording motion. Kinematics of the transport and grasp component, and hand orientation at the moment of grasping, were determined. A marker on the wrist was used to calculate the kinematics of the transport component. The distance between the markers on the index finger and thumb was used for the calculation of the grasp component. Kinematic variables of the transport and grasp component were remarkably similar between both sides of the body. However, with the contra-lesional side, more time was spent in contact with the object before it was lifted, and movements were performed less fluently compared with the ipsi-lesional side. Maximum grasp aperture was attained very late during reaching. For final hand orientation, results showed a large standard deviation both within and between participants. These findings show that, despite the ostensible awkward prehension movements of the contra-lesional side (slowness and decreased fluency), similarities in the kinematics between both sides of the body are present, which may be indicative of intact central control of the movement. The results of variant final hand orientation, combined with the relative late occurrence of peak aperture, suggest that these participants encounter difficulties with forward planning and may use a step-by-step control strategy.

In this preliminary study, visual search for targets within and beyond the initial field of view was investigated in seven school-aged children (five females, two males; mean age at testing 8 years 10 months, SD 1 year 3 months; range 6 to 10 years) with various acquired, postnatal, focal brain injuries (haematoma, haemorrhage, meningioma, neuroblastoma, and cerebral abscess) in anterior or posterior sites of the left or right hemisphere, and seven control children (matched for age and sex) were also studied. All participants attended mainstream primary schools. The children with lesions underwent surgery after diagnosis (mean age at diagnosis 5 years 4 months, SD 2 years 7 months). Group results indicated that for the overall scores on three psychometric tests of visuospatial and fine motor abilities (Southern California Figure Ground Perception Test, Visual Organization Test, and Visual–Motor Integration Test), no difference between the children with left and right lesions was present. However, children with lesions in the right hemisphere, and not in the left hemisphere, took significantly more time than the controls to locate visual targets presented within and beyond the field of view. Examination of individual data suggested that, in accordance with brain imaging research, right-sided anterior cerebral lesions sustained in early childhood might have an enduring detrimental effect on voluntary visual search performance during development. This persistent effect of early brain injury might imply that developmental plasticity of the brain does not apply to certain specific functions of particular areas of the right hemisphere.

This study examined cognitive development in Silver–Russell syndrome (SRS), a condition with intrauterine growth retardation, persisting short stature, and specific stigmata. Neuropsychological function and cognitive abilities were assessed in a sample of 36 children with SRS (21 males, 15 females; mean age 7 years 6 months, SD 2 years 8 months; age range 3 to 12 years) and 25 normally developing siblings (mean age 8 years 6 months, SD 2 years 7 months; age range 3 to 12 years) using the Kaufman Assessment Battery for Children. Special measures were taken to control for confounding factors and sample bias. Mean overall IQ score in the total SRS sample (95.7, SD 10.63), as measured by the Mental Processing Composite Scale, was significantly reduced (p=0.021) compared with test norms (IQ 100, SD 15), indicating a moderate cognitive impairment. Subscale analysis revealed some specific deficiencies. However, these cannot be attributed to an established category of specific learning disorder. The mean score in the Achievement Scale (91.25, SD 14.92), which is more sensitive to educational influences, showed stronger deficits (p=0.001). The sibling control group achieved a slightly better mean IQ score (104.20, SD 12.32) than test norms (p=0.10). Direct analysis of paired differences between the subsample of children with SRS and a sibling among the control group (n=25) revealed a significant mean difference of 8.08 IQ points (p=0.011). Risk factor analysis revealed that cognitive development is not associated with birth length (p=0.404), birthweight (p=0.820), growth hormone therapy (p=0.810), phenotypic severity (p=0.828), or sex (p=0.880). Two children with maternal uniparental disomy for the entire chromosome 7 had markedly lower IQ scores (81 and 84 respectively). In contrast to the few previous findings, children with SRS show only moderate, but significant, impairments in cognitive outcome, which are more striking in our sample when compared with siblings than with test norms.

To understand the evolution of photosensitivity and to evaluate if its disappearance is related to the response to anticonvulsant therapy, we performed a long-term study of 42 patients (17 males, 25 females; age at onset 6 years 9 months, SD 5 years 2 months, range 5 years to 12 years 1 month) who had electroencephalography (EEG) evidence of photosensitive epilepsy. Of the patients, 36 were treated with valproate (VPA) monotherapy and four received VPA in combination with other antiepileptic drugs (AEDs), which were carbamazepine and lamotrigine. Two patients were given no drugs, but treated with stimuli avoidance. All patients were investigated with EEG by using intermittent photic stimulation. The photoparoxysmal response indicated the presence of photosensitivity. At the end of follow-up, the photoparoxysmal response had disappeared in 25 patients. Thirty-three patients became seizure-free. Our study confirms that photosensitive epilepsy has a good prognosis for seizure control that is independent of the persistence or disappearance of photosensitivity.

Orthotics and physical therapy are offered to children with myelomeningocele, often without objective evidence of efficacy. Bracing of the lower limbs in children with myelomeningocele can be categorized into three groups based on the degree and extent of muscle weakness. Children with lesions at the thoracic and upper-lumbar level lack strength in hip extensors, hip abductors, knee flexors, knee extensors, ankle plantarflexors, and ankle dorsiflexors. They require the support of an orthosis such as a parapodium (standing frame), parawalker, reciprocating gait orthosis, or hip-knee-ankle-foot orthosis. Children with a low-lumbar level of paralysis lack strength in hip extensors, ankle plantarflexors, and ankle dorsiflexors and may need a solid ankle–foot orthosis to stabilize the ankle and assist knee extension in the stance phase of gait. Children with lesions at the sacral level either need no bracing or may need a foot orthosis to compensate for weak intrinsic foot muscles.