Accelerometer-measured physical activity, sedentary behavior, and sleep in children with cerebral palsy and their adherence to the 24-hour activity guidelines.

AIM: To measure and describe the 24-hour activities (i.e. physical activity, sedentary behavior, and sleep) and to examine adherence to the 24-hour activity guidelines among children with cerebral palsy (CP) using actigraphy. METHOD: Children's 24-hour activities were recorded over 7 days using hip- and wrist-worn ActiGraph wGT3X-BT accelerometers. RESULTS: In total, 362 days and 340 nights from 54 children with CP (Gross Motor Function Classification System [GMFCS] levels I-III; 44% females; median age [range] 6 years 6 months [3-12 years]) were included. Mean (SD) daily wear time was 746.2 (48.9) minutes, of which children spent on average 33.8% in light physical activity (251.6 [58.7] minutes per day), 5.2% in moderate-to-vigorous physical activity (38.5 [20.1] minutes per day), and the remaining 61.1% being sedentary (456.1 [80.4] minutes per day). Physical activity decreased while sedentary behavior increased with increasing GMFCS level. In total, 13% of all children met the physical activity recommendations, and 35% met the age-appropriate sleep duration recommendation. The proportion of children meeting the combined 24-hour guidelines for physical activity and sleep was low (5.9%), especially in those classified in GMFCS level III (0%). INTERPRETATION: The observed low 24-hour guideline adherence rates emphasize the importance of considering the entire continuum of movement behaviors in the care of children with CP, in efforts to promote healthy lifestyle behaviors and prevent negative health outcomes.

Device-based and subjective measurements of sleep in children with cerebral palsy: a comparison of sleep diary, actigraphy, and bed sensor data.

STUDY OBJECTIVES: To investigate how subjective assessments and device-based measurements of sleep relate to each other in children with cerebral palsy (CP). METHODS: Sleep of children with CP, classified at Gross Motor Function Classification System levels I-III, was measured during 7 consecutive nights using 1 subjective (ie, sleep diary) and 2 device-based (ie, actigraphy and bed sensor) instruments. The agreement between the instruments was assessed for all nights and separately for school- and weekend nights, using intraclass correlation coefficients (ICC) and Bland-Altman plots. RESULTS: A total of 227 nights from 38 children with CP (53% male; median age [range] 6 [2-12] years), were included in the analyses. Sleep parameters showed poor agreement between the 3 instruments, except for total time in bed, which showed satisfactory agreement between (1) actigraphy and sleep diary (ICC > 0.86), (2) actigraphy and bed sensor (ICC > 0.84), and (3) sleep diary and bed sensor (ICC > 0.83). Furthermore, agreement between sleep diary and bed sensor was also satisfactory for total sleep time (ICC > 0.70) and wakefulness after sleep onset (ICC = 0.55; only during weekend nights). CONCLUSIONS: Researchers and clinicians need to be aware of the discrepancies between instruments for sleep monitoring in children with CP. We recommend combining both subjective and device-based measures to provide information on the perception as well as an unbiased estimate of sleep. Further research needs to be conducted on the use of a bed sensor for sleep monitoring in children with CP. CITATION: van Rijssen IM, Hulst RY, Gorter JW, et al. Device-based and subjective measurements of sleep in children with cerebral palsy: a comparison of sleep diary, actigraphy, and bed sensor data. J Clin Sleep Med. 2023;19(1):35-43.

Assessing Participation in Adolescents With Cerebral Palsy: Comparison of Life-Habits and USER-Participation.

Objective: To explore and compare the contents and scores of the Assessment of Life Habits (Life-H) with the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in adolescents with cerebral palsy. Design: Youth versions of both instruments were used for (1) content comparison and (2) analyses of relations between both instruments, based on cross-sectional data. Setting: Clinic. Participants: Participants were adolescents with cerebral palsy, aged 12-18 years; Gross Motor Function Classification System I-V; N=45. Interventions: Not applicable. Main outcome measures: Assessment of Life Habits (Life-H) with USER-Participation. Results: Both instruments measure independence in participation, called accomplishment (Life-H) and restrictions (USER-Participation), and satisfaction with participation. Life-H provides a profile of 6 domain scores and the USER-Participation a total score per dimension. Compared with the USER-Participation, the Life-H contains more specific items, more items not-applicable to many participants and more ceiling effects. Total scores on the accomplishment/restrictions and satisfaction scales between both instruments showed strong correlation coefficients (0.87 and 0.67, respectively). Correlations between domain scores were stronger within the accomplishment/restrictions scales (range 0.37-0.88) compared with the satisfaction scales (range 0.22-0.68). Conclusions: Compared with the USER-Participation, the Life-H takes more effort to complete but provides a more comprehensive assessment of participation. Participation accomplishment/restrictions scores were more similar between the instruments compared with satisfaction scores. Researchers and clinicians should carefully compare participation instruments in selecting one that matches their purpose.

Parental perspectives on care for sleep in children with cerebral palsy: a wake-up call.

PURPOSE: Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1-8 years) with CP. MATERIALS AND METHODS: Individual, semi-structured interviews were conducted with eighteen parents of a child with CP (GMFCS levels I-V). Inductive thematic analysis of the data was performed within each of the three preidentified domains: 1) Current situation; 2) Concerns; 3) Needs. RESULTS: In total, sixteen themes were identified across the three domains. Within the families' Current situation, parents expressed various issues concerning the care for sleep of their child both at night and during daytime, which are hampered by perceived deficiencies in healthcare, such as limited attention for sleep and lack of knowledge among health professionals. Themes within the Concerns and Needs domains encompassed experiences in the home environment relating to child, family and social aspects, while experiences in the healthcare setting included clinical practices and attitudes of healthcare professionals, as well as the broader organisation of care for sleep. CONCLUSIONS: Parents face numerous challenges caring for their child's sleep and the burden placed on families by sleep problems is underappreciated. In order to break the vicious circle of sleep problems and their disastrous consequences on the wellbeing of families, we need to wake up to parent-identified issues and shortcomings in healthcare. Care for sleep should be integrated into paediatric rehabilitation through routine inquiries, using a family-centered and multidisciplinary approach.IMPLICATIONS FOR REHABILITATIONThe heavy burden placed on families by sleep problems in children with cerebral palsy warrants acknowledgement in paediatric healthcare.Sleep should be routinely addressed by clinicians during health assessments using a family-centered, and multidisciplinary approach.Healthcare professionals ought to adopt a proactive, understanding, and non-judgmental attitude when addressing sleep problems.Future research should focus on developing sleep intervention strategies that take into account the diverse parental concerns and needs unique to each family situation.

Sleep problems in children with cerebral palsy and their parents.

AIM: To describe: (1) the frequency and types of sleep problems, (2) parent-rated satisfaction with their child's and their own sleep, and (3) child factors related to the occurrence of sleep problems in children with cerebral palsy (CP) and their parents. The secondary objective was to compare the sleep outcomes of children with CP with those from typically developing children and their parents. METHOD: The Sleep section of the 24-hour activity checklist was used to assess the sleep of children with CP and their parents and the sleep of typically developing children and their parents. RESULTS: The sleep outcomes of 90 children with CP (median age 5y, range 0-11y, 53 males, 37 females, 84.4% ambulatory) and 157 typically developing peers (median age 5y, range 0-12y; 79 males, 78 females) and their parents were collected. Children with CP were more likely to have a sleep problem than typically developing children. Non-ambulatory children with CP were more severely affected by sleep problems than ambulatory children. The parents of non-ambulatory children were less satisfied about their child's and their own sleep. Waking up during the night, pain/discomfort in bed, and daytime fatigue were more common in children with CP and more prevalent in children who were non-ambulatory. INTERPRETATION: These findings highlight the need to integrate sleep assessment into routine paediatric health care practice. What this paper adds Children with cerebral palsy (CP) are more likely to have a sleep problem than typically developing peers. Non-ambulatory children with CP are more severely affected by sleep problems. One-third of parents of children with CP report feeling sleep-deprived often or always compared to a quarter of parents of typically developing children.

Prognostic value of brain abnormalities for cognitive functioning in cerebral palsy: A prospective cohort study.

INTRODUCTION: Brain abnormalities in cerebral palsy (CP) are known to relate to motor outcome; however, their association with cognitive functioning is less clear. AIM OF THE STUDY: 1) To investigate the prognostic value of brain abnormalities for cognitive functioning; 2) To explore the added value of prognostic variables across ICF domains: motor function, epilepsy, gestational age, birthweight and educational level of the parents. METHODS: We retrospectively analyzed brain MRI scans of 75 children with CP (GMFCS level I-V, 36% born preterm), as part of a longitudinal study. MRI classification: qualitative classification of brain abnormality pattern and semi-quantitative grading of the extent of damage. Cognitive functioning, measured as non-verbal intelligent quotient (IQ), was dichotomized into 'impaired cognition' (IQ ≤ 70) and 'normal' (IQ > 70). Multivariable logistic regression produced odds ratios (OR) with 95% confidence interval (C.I.) of risk factors for impaired cognition. RESULTS: Overall, 27% of the tested participants had a non-verbal IQ below 70 and 36% of the participants was classified as 'having impaired cognition'. At a young age, a higher degree of white matter damage (OR 1.6, 95% C.I. 0.97-2.67) and a more severe GMFCS level (OR 3.2, 95% C.I. 1.70-5.98) are risk factors for impaired cognition at school-age (4-7 years of age). This model correctly predicts 89% of the cases. Brain damage alone predicts the presence of impaired cognition in 71% of the cases. INTERPRETATION: Brain MRI characteristics and GMFCS level at a young age can each help identify children with CP at risk for impaired cognition at school age and together have a strong predictive value.

The effects of modified constraint-induced movement therapy combined with intensive bimanual training in children with brachial plexus birth injury: a retrospective data base study.

BACKGROUND: In children with Brachial Plexus Birth Injury, a non-use of the affected upper limb despite sufficient capacity, is sometimes observed, called developmental disregard. The combination of modified constraint-induced-movement-therapy with bimanual training is frequently applied to overcome developmental disregard in unilateral Cerebral Palsy. In the current study the effects of the combination of modified constraint-induced-movement-therapy with bimanual training are investigated in children with Brachial Plexus Birth Injury in comparison to children with unilateral Cerebral Palsy. We hypothesize that the combination of modified constraint-induced-movement-therapy with bimanual training is effective in Brachial Plexus Birth Injury. METHODS: Data of 19 children with Brachial Plexus Birth Injury (Mage: 4.1 years) and 18 with unilateral Cerebral Palsy (Mage: 4.5 years) were compared. The effects of modified constraint-induced-movement-therapy with bimanual training (54 h modified constraint-induced-movement-therapy, 18 h bimanual training, 8-10 weeks) was investigated by assessing spontaneous affected-upper-limb-use ("Assisting Hand Assessment"), manual abilities ("ABILHAND-kids") and subjective performance and satisfaction of problematic bimanual activities ("Canadian Occupational Performance Measure") at three time points (pre-treatment, post-treatment, follow-up). This data was analyzed using repeated-measures analysis. RESULTS: Children with Brachial Plexus Birth Injury showed significant improvements on all outcome measures following modified constraint-induced-movement-therapy with bimanual training. These results were comparable to those observed in the group of children with unilateral Cerebral Palsy. DISCUSSION: These results suggest that modified constraint-induced-movement-therapy with bimanual training is effective in Brachial Plexus Birth Injury. They indicate a comparable improved bimanual performance in children with Brachial Plexus Birth Injury than in unilateral Cerebral Palsy and suggests that both groups of children have affectively overcome their developmental disregard.IMPLICATIONS FOR REHABILITATIONChildren with Brachial Plexus Birth Injury frequently experience difficulties in activities of daily living.It has recently been suggested that children with Brachial Plexus Birth Injury may also show a non-use of the affected upper limb despite sufficient capacity, called developmental disregard.Children with Brachial Plexus Birth Injury and developmental disregard might therefore benefit from intensive therapies aimed at overcoming developmental disregard, originally developed for children with unilateral Cerebral Palsy.A combination of modified Constrained-Induced Movement Therapy with intensive Bimanual Training has shown to be affective in children with unilateral Cerebral Palsy.In a small sample, this study shows that a combination of modified Constrained-Induced Movement Therapy with intensive bimanual training is effective in children with Brachial Plexus Birth Injury, comparable and even more than in unilateral Cerebral Palsy.

Sleep health practices and sleep knowledge among healthcare professionals in Dutch paediatric rehabilitation.

BACKGROUND: Sleep disorders are highly prevalent in children with neurodisabilities, yet they seem under-recognized in paediatric rehabilitation settings. The aim of this study was to assess among two groups of healthcare professionals (HCPs) working in paediatric rehabilitation: (1) sleep health practices and (2) knowledge about sleep physiology, sleep disorders and sleep hygiene. METHODS: We performed a cross-sectional sleep survey among medical and non-medical HCPs and the general population. Participants (30 rehabilitation physicians [RPs], 54 allied health professionals [AHPs] and 63 controls) received an anonymous 30-item survey consisting of three domains: (1) general information, (2) application of sleep health practices and (3) sleep knowledge. RESULTS: RPs address sleep issues more frequently in clinical practice than AHPs. Sleep interventions mostly consist of giving advice about healthy sleep practices and are given by the majority of HCPs. While RPs demonstrated the highest scores on all knowledge domains, total sleep knowledge scores did not exceed 50% correct across groups, with AHPs and controls showing equal scores. Sleep hygiene rules closest to bedtime and related to the sleep environment were best known, whereas those related to daytime practices were rarely mentioned across all groups. A small minority of HCPs (RPs 20%; AHPs 15%) believed to possess sufficient sleep knowledge to address sleep in clinical practice. No association was found between self-perceived knowledge and sleep knowledge scores among HCPs. CONCLUSIONS: Sleep should become a standard item for review during routine health assessments in paediatric rehabilitation settings. HCPs' limited exposure to sleep education may result in feelings of incompetence and inadequate sleep knowledge levels, affecting their sleep health practices. Appropriate sleep training programs should be implemented to empower HCPs with knowledge, skills and confidence, needed to recognize and treat sleep disorders in children with neurodisabilities, as well as to be able to guide parents.

Development curves of communication and social interaction in individuals with cerebral palsy.

AIM: To determine development curves of communication and social interaction from childhood into adulthood for individuals with cerebral palsy (CP). METHOD: This Pediatric Rehabilitation Research in the Netherlands (PERRIN)-DECADE study longitudinally assessed 421 individuals with CP, aged from 1 to 20 years at baseline, after 13 years (n=121 at follow-up). Communication and social interactions were assessed using the Vineland Adaptive Behavior Scales. We estimated the average maximum performance limit (level) and age at which 90% of the limit was reached (age90 ) using nonlinear mixed-effects modeling. RESULTS: One-hundred individuals without intellectual disability were aged 21 to 34 years at follow-up (39 females, 61 males) (mean age [SD] 28y 5mo [3y 11mo]). Limits of individuals without intellectual disability, regardless of Gross Motor Function Classification System (GMFCS) level, approached the maximum score and were significantly higher than those of individuals with intellectual disability. Ages90 ranged between 3 and 4 years for receptive communication, 6 and 7 years for expressive communication and interrelationships, 12 and 16 years for written communication, 13 and 16 years for play and leisure, and 14 and 16 years for coping. Twenty-one individuals with intellectual disability were between 21 and 27 years at follow-up (8 females, 13 males) (mean age [SD] 24y 7mo [1y 8mo]). Individuals with intellectual disability in GMFCS level V showed the least favourable development, but variation between individuals with intellectual disability was large. INTERPRETATION: Individuals with CP and without intellectual disability show developmental curves of communication and social interactions similar to typically developing individuals, regardless of their level of motor function. Those with intellectual disability reach lower performance levels and vary largely in individual development. WHAT THIS PAPER ADDS: Communication and social interactions in individuals with cerebral palsy without intellectual disability develop similarly to typically developing individuals. Communication and social interactions of individuals with intellectual disability develop less favourably and show large variation.

CURVAS DE DESARROLLO DE COMUNICACIÓN E INTERACCIÓN SOCIAL EN NIÑOS CON PARÁLISIS CEREBRAL: OBJETIVO: Determinar las curvas de desarrollo de la comunicación y la interacción social desde la infancia hasta la edad adulta para las personas con parálisis cerebral (PC). MÉTODO: Esta Investigación de Rehabilitación Pediátrica en el Estudio de los Países Bajos (PERRIN)-DECADE evaluó longitudinalmente 421 individuos con PC, de 1 a 20 años en el inicio, después de 13 años (n=121 en el seguimiento). La comunicación y las interacciones sociales se evaluaron utilizando la Escala de comportamiento adaptativo de Vineland. Estimamos el límite promedio de rendimiento máximo (nivel) y la edad a la que se alcanzó el 90% del límite (edad90 ) utilizando un modelo no lineal de efectos mixtos. RESULTADOS: Cien individuos sin discapacidad intelectual tenían entre 21 y 34 años en el seguimiento (39 mujeres, 61 varones; edad media [DS] 28 y 5 meses [3 años y 11meses]). Los límites de las personas sin discapacidad intelectual, independientemente del nivel del Sistema de Clasificación de la Función Motora Gruesa (GMFCS), se acercaron a la puntuación máxima y fueron significativamente superiores a los de personas con discapacidad intelectual. Edad 90s entre 3 y 4 años para la comunicación receptiva, 6 y 7 años para la comunicación expresiva y las interrelaciones, 12 y 16 años para la comunicación escrita, 13 y 16 años por juego y ocio, y 14 y 16 años por sobrellevarlo. Veintiún individuos con discapacidad intelectual tenían entre 21 y 27 años en seguimiento (8 mujeres, 13 hombres; edad media [DS] 24 años y 7 meses [1 año y 8 meses]). Las personas con discapacidad intelectual en el nivel V de GMFCS mostraron el desarrollo menos favorable, pero la variación entre las personas con discapacidad intelectual fue grande. INTERPRETACIÓN: Las personas con PC sin discapacidad intelectual muestran curvas de desarrollo de comunicación e interacciones sociales similares a las personas con desarrollo típico, no considerando su nivel de función motora. Las personas con PC y discapacidad intelectual alcanzan niveles de rendimiento más bajos y varían en gran medida en el desarrollo individual.

CURVAS DE DESENVOLVIMENTO DA COMUNICAÇÃO E INTERAÇÃO SOCIAL EM CRIANÇAS COM PARALISIA CEREBRAL: OBJETIVO: Determinar as curvas de desenvolvimento e interação social da infância para a adolescência para indivíduos com paralisia cerebral (PC). MÉTODO: Este estudo Europeu de Reabilitação Pediátrica na Holanda (PERRIN)-DECADE avaliou longitudinalmente 421 indivíduos com PC, com idades de 1 a 20 anos na linha de base, após 13 anos, (n=121 no acompanhamento). A comunicação e interação social foram avaliadas usando as Escalas Vineland de Compartamento Adaptativo. Estimamos o limite máximo de desempenho médio (nível) e idade em que 90% do limite foi atingido (idade90 ) usando modelos não-lineares de efeitos mistos. RESULTADOS: Cem indivíduos sem deficiência intelectual com idades entre 21 e 34 anos no acompanhamento (39 do sexo feminino, 61 do sexo masculino; média de idade [DP] 28a 5m [3a 11m]). Os limites de indivíuduos sem deficiência intelectual, independente do nível do Sistema de Classificação da Função Motora Grossa (GMFCS), se aproximou da pontuação maxima e foram significativamente maiores do que os valores de indivíduos com deficiência intelectual. A idade 90s variou entre 3 e 4 anos para comunicação receptiva, 6 e 7 anos para comunicação expressiva e intercomunicações, 12 e 16 anos para comunicação escrita, 12 e 16 years para brincadeiras e lazer, e 14 e 16 anos para adaptabilidade. Vinte e um indivíduos com deficiência intelectual estavam entre 21 e 27 anos no acompanhamento (8 do sexo feminino, 13 do sexo masculino; média de idade [DP] 24a 7m [1a 8m]). Indivíduos com deficiência intelectual no nível GMFCS V mostraram o desenvolvimento menos favorável, mas a variação entre indivíduos com deficiência intelectual foi grande. INTERPRETAÇÃO: Indivíduos com PC com e sem deficiência intelectual mostram curvas desenvolvimentais de comunicação e interação social similares a indivíduos com desempenho típico, independente do nível de função motora. Aqueles com deficiência intelectual tiveram menores níveis de performance e variaram amplamente no desenvolvimento individual.

Mobility and self-care trajectories for individuals with cerebral palsy (aged 1-21 years): a joint longitudinal analysis of cohort data from the Netherlands and Canada.

BACKGROUND: A good understanding of developmental trajectories is crucial for making prognoses, planning interventions, and monitoring progress in children and adolescents with cerebral palsy. Our study aimed to describe developmental trajectories of mobility and self-care capability in a large sample of children and adolescents with cerebral palsy from the Netherlands and Canada. METHODS: We did longitudinal data analyses of cohorts from the Netherlands (Pediatric Rehabilitation Research in the Netherlands; PERRIN) and Ontario, Canada (Adolescent Study of Quality of Life, Mobility, and Exercise; ASQME). All participants had a confirmed diagnosis of cerebral palsy and ranged in age from 1 year to 17 years at baseline, and were recruited from rehabilitation centres and university medical centres. Individuals diagnosed with additional conditions affecting motor function other than cerebral palsy (eg, spina bifida or muscle diseases) were excluded. After baseline assessment, up to three follow-up assessments were done at 1 year intervals. The whole spectrum of severity of cerebral palsy was represented in terms of motor function, using the Gross Motor Function Classification System (GMFCS). Mobility and self-care capability were assessed with the Pediatric Evaluation of Disability Inventory (PEDI). We applied non-linear mixed-effects modelling to estimate limits, rates, and variations of development. FINDINGS: For both projects, recruitment took place between 2002 and 2007. The combined dataset included 551 individuals with cerebral palsy (321 individuals from the PERRIN programme and 230 from ASQME), aged 1 year to 17 years at baseline, with longitudinal data available for up to 4 years. On the basis of a total of 1754 PEDI observations, we created developmental curves for ages 1-21 years. Both for mobility and self-care, limits and rates of development differed among individuals across GMFCS levels, resulting in distinct curves. For individuals classified as being in GMFCS level I, the estimated mean limit for mobility and self-care were both higher than 90 (95·6, 95% CI 94·5-96·7 for mobility and 91·8, 90·1-93·4 for self-care), indicating capability for most if not all items on the PEDI. By comparison, the estimated mean limits for children in levels II-V varied from 83·0 (80·3-85·7) to 23·6 (20·7-26·4), with increasing limitations in mobility and self-care capability for higher GMFCS levels. Individuals with lower GMFCS levels (ie, less severe cerebral palsy) showed higher developmental limits that were reached during a longer period of development. However, among individuals within the same GMFCS level, we found substantial interindividual variation in development for mobility, and even more so for self-care. INTERPRETATION: Prognosis for mobility and self-care capability can largely be based on developmental trajectories for children and adolescents with cerebral palsy grouped by GMFCS level. The interindividual variation in development within GMFCS levels indicates that, in addition to GMFCS level, other contextual factors need to be considered when discussing prognosis and management. Using the curves for individuals with cerebral palsy aged 1 year to 21 years, we illustrate how this new knowledge can be applied in paediatric practice. FUNDING: The Netherlands Organisation for Health Research and Development and the Canadian Institutes of Health Research.

Longitudinal Association Between Gross Motor Capacity and Neuromusculoskeletal Function in Children and Youth With Cerebral Palsy.

OBJECTIVE: To examine associations over longitudinal measurements between neuromusculoskeletal function and gross motor capacity in children and youth with cerebral palsy (CP). DESIGN: A prospective cohort study. SETTING: Rehabilitation departments of university medical centers and rehabilitations centers. PARTICIPANTS: A sample (N=327) consisting of 148 children (aged 5-9y) and 179 youth (aged 11-20y) with CP, Gross Motor Function Classification System level I (n=180), level II (n=44), level III (n=36), level IV (n=34), and level V (n=33). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Gross motor capacity was assessed with the Gross Motor Function Measure-66 over a period of 2 to 4 years in different age cohorts. Neuromusculoskeletal function included selective motor control (SMC), muscle strength, spasticity, and range of motion (ROM) of the lower extremities. RESULTS: Multilevel analyses showed that SMC was significantly associated with gross motor capacity in children and youth with CP, showing higher values and a more favorable course of gross motor capacity in those with better SMC. Strength was only associated with gross motor capacity in youth. Reduced ROM of hip (children) and knee extension (youth) and spasticity of the hip adductors (youth) were additionally-but more weakly-associated with lower values and a less favorable course of gross motor capacity. CONCLUSIONS: Results indicate that children and youth with more severely impaired SMC and youth with reduced muscle strength have a less favorable course of gross motor capacity, while spasticity and reduced ROM are less determinative.

Developmental trajectories of receptive and expressive communication in children and young adults with cerebral palsy.

AIM: The aim of this study was to determine the developmental trajectories of expressive (speech) and receptive (spoken and written language) communication by type of motor disorder and intellectual disability in individuals with cerebral palsy (CP). METHOD: The development of 418 participants (261 males, 157 females; mean age 9y 6mo [SD 6y 2mo], range 1-24y; Gross Motor Function Classification System (GMFCS) level I [n=206], II [n=57], III [n=59], IV [n=54], V [n=42]) was followed for 2 to 4 years in a longitudinal study. Communication performance was measured using the Vineland Adaptive Behavior Scales. The type of motor disorder was differentiated by type of CP as unilateral spastic (USCP, n=161), bilateral spastic (BSCP, n=202), and non-spastic (NSCP, n=55), while intellectual disability was determined by IQ or school type (regular or special). A multilevel analysis was then used to model the developmental trajectories. RESULTS: The most favourable development of expressive communication was seen in USCP (vs BSCP ß [SE]-2.74 [1.06], NSCP ß [SE]-2.67 [1.44]). The difference between the development trajectory levels of children with and without intellectual disability was smaller for children with USCP than for those with BSCP and NSCP. For receptive communication, the most favourable development was found for all children with USCP and for BSCP or NSCP without intellectual disability (vs intellectual disability ß [SE]-4.00 [1.16]). Development of written language was most favourable for children without intellectual disability (vs intellectual disability ß [SE]-23.11 [2.85]). INTERPRETATION: The development of expressive communication was found to be most closely related to type of motor disorder, whereas the development of receptive communication was found to be most closely related to intellectual disability.

Developmental trajectories of social participation in individuals with cerebral palsy: a multicentre longitudinal study.

AIM: This study aimed to determine the developmental trajectories of social participation, by level of gross motor function and intellectual disability, in a Dutch population of individuals with cerebral palsy (CP) aged 1 to 24 years. METHOD: As part of the Pediatric Rehabilitation Research in the Netherlands (PERRIN+), 424 individuals with CP (261 males, 163 females; mean age [SD] 9y 6mo [6y 2mo]; Gross Motor Function Classification [GMFCS] levels I-V [50% level I]; 87% with spastic CP; 26% with intellectual disability) were longitudinally followed for up to 4 years between 2002 and 2007. Social participation was assessed with the Vineland Adaptive Behavior Scales survey. Effects of age, GMFCS level and intellectual disability were analysed using multilevel modelling. RESULTS: The developmental trajectories for individuals in GMFCS levels I to IV did not significantly differ from each other. For individuals without intellectual disability, the degree of social participation increased with age and stabilized at about 18 years. These individuals reached social participation levels similar to typically developing individuals. The trajectories were significantly less favourable for individuals in GMFCS level V and individuals with intellectual disability. INTERPRETATION: Intellectual disability is more distinctive for the development of social participation than GMFCS level. The developmental trajectories will support individuals with CP and their families in setting realistic goals and professionals in optimizing the choice of interventions at an early age.

Developmental trajectories of daily activities in children and adolescents with cerebral palsy.

OBJECTIVES: To describe the developmental trajectories of mobility performance and daily activities in children and young adults with cerebral palsy (CP). To explore the influence of gross motor function and intellectual disability on these trajectories. METHODS: Four hundred and twenty-four Dutch participants with CP (aged 1-20 years at study onset) were followed yearly over a period of 2 to 4 years. Developmental trajectories (from ages 1-16 years) were described for mobility performance and performance of daily activities, assessed by using the Vineland Adaptive Behavior Scale for gross motor function (classified by the Gross Motor Function Classification System) and intellectual disability (by IQ or school type). A subanalysis was done for performance of daily activities in a subgroup of participants without intellectual disability (aged 1-24 years). RESULTS: The developmental trajectories of mobility performance differed according to levels of gross motor function but not levels of intellectual disability. Intellectual disability affected the performance of daily activities, with lower overall trajectory levels for participants with intellectual disabilities. For participants without intellectual disability, high-level developmental trajectories were found, with values similar to those of typically developing children despite differences in gross motor function level. CONCLUSIONS: Mobility performance is determined mainly by levels of gross motor function. For performance of daily activities, intellectual disability was a more important determinant. Participants without intellectual disability showed developmental trajectories approaching values for typically developing participants. These estimated trajectories can guide rehabilitation interventions and future expectations for children and young adults with CP.

Manual ability and its relationship with daily activities in adolescents with cerebral palsy.

OBJECTIVE: To describe the manual ability of adolescents with cerebral palsy and to investigate the relationship of manual ability with daily activities. DESIGN: Cross-sectional study. SUBJECTS: Ninety-four adolescents with cerebral palsy, aged 12-16 years. METHODS: Manual ability was assessed according to the Manual Ability Classification System (MACS) and the ABILHAND-Kids. Daily activities were assessed with the Vineland Adaptive Behavior Scales (VABS) sub-scales for (personal and domestic) daily living skills. The relationship between manual ability and daily activities was investigated with regression analysis: independent variables were manual ability, disease and personal characteristics. RESULTS: MACS and ABILHAND-Kids were both strongly associated with personal daily activities (explained variance 77% and 84%, respectively) and less strongly with domestic daily activities (explained variance 45% and 62%, respectively). Including other disease characteristics and personal characteristics in the model increased the explained variance of personal daily activities to 91% for both models and the explained variance of domestic daily activities to 68% and 73% for the MACS and ABILHAND-Kids models, respectively. CONCLUSION: Manual ability is limited in many adolescents with cerebral palsy, and limitations in manual ability are strongly related to limitations in daily activities.

Course of health-related quality of life in 9-16-year-old children with cerebral palsy: associations with gross motor abilities and mental health.

PURPOSE: To chart the 3-year course of health-related quality of life (HRQoL) of 9--13-year-old children with cerebral palsy (CP), and to determine its relationship with gross motor abilities and mental health. METHODS: Children (n = 91; 58 boys, mean age 11 years, age ranging from 8 years and 6 months to 13 years and 8 months) and parents were assessed annually with the TNO-AZL questionnaires for children's health-related quality of life as a dependent variable, and the gross motor function measure for children with CP and the child behaviour check list as independent variables. RESULTS: The children reported lower HRQoL compared with children in the general population, but reported a higher HRQoL than their parents. The HRQoL remained fairly stable over the 3 years, except for an increase in the autonomy domain. The HRQOL was moderately associated with gross motor abilities, and negatively associated with internalising mental health problems. Externalising problems were only negatively associated with parent-reported HRQoL. CONCLUSIONS: Children with CP are more resilient and positive about their HRQoL than their parents think they are. In general, mental health in children with CP appeared to be important in understanding their perceived QoL, in addition to the severity of the CP itself.

Social functioning and communication in children with cerebral palsy: association with disease characteristics and personal and environmental factors.

AIM: The objective of this longitudinal study was to describe the course of social functioning and communication in children with cerebral palsy (CP) over a 3-year period, its difference with the normative course, and its relationship with disease characteristics and personal and environmental factors. METHOD: Participants in this study were 110 children with CP (70 males, 40 females) with a mean age of 11 years and 3 months (SD 1y 8mo). Social functioning and communication were measured with the Vineland Adaptive Behavior Scales. Comparisons were made with normative data; data were analysed with generalized estimating equations. According to the Gross Motor Function Classification System (GMFCS), 50 of the 110 children were categorized as GMFCS level I, 16 as level II, 13 as level III, 13 as level IV, and 18 as level V. RESULTS: The course of social functioning over a 3-year period showed an increase in restrictions in children with CP (p<0.001). Restrictions in communication increased more in children with the most severe forms of CP (p<0.001). In addition to disease characteristics (GMFCS category, presence of epilepsy, and speech problems), personal factors (externalizing behaviour problems) and environmental factors (having no siblings, low parental level of education, and parental stress) were associated with greater restrictions in social functioning and communication. INTERPRETATION: The results indicate that it is important to focus not only on the medical treatment of children with CP, but also on their behavioural problems and social circumstances, and to support the parents so that social functioning and communication in these children may be improved.

Longitudinal study of motor performance and its relation to motor capacity in children with cerebral palsy.

AIM: The aim of this study was to describe the course of motor performance and analyse its relationship with motor capacity over a period of 3 years in 104 children (66 males, 38 females; 43% of those initially invited) with cerebral palsy (CP) aged 9, 11, and 13 years at the start of the study. Forty-one had hemiplegia, 42 diplegia, 21 tetraplegia; 83 spastic CP, 17 dyskinetic/mixed, and four ataxic CP. Gross Motor Function Classification System (GMFCS) levels were I, n=49; II, n=15; III, n=10; IV, n=12; and V, n=18. METHOD: Motor performance (what a child does do) was determined using the gross motor skills subscale of the Vineland Adaptive Behavior Scales and motor capacity [what a child can do] was determined using the Gross Motor Function Measure-66 (GMFM-66). The measurements were performed annually over a period of 3 years. RESULTS: The course of motor performance in mildly affected children (GMFCS level I) was more favorable than in more severely affected children. An increase in motor capacity was significantly related to an improvement in motor performance over the 3 years. INTERPRETATION: Training motor capacity in children with CP seems to be important for improving motor performance. Interventions should also focus on environmental adaptations and improving mobility equipment. A limitation of this study was that the instruments used did not contain the same items on capacity and performance level.

Skeletal maturation in children with cerebral palsy and its relationship with motor functioning.

The objective of this study was to describe skeletal maturation in relation to chronological age in children with cerebral palsy (CP) aged 9 to 16 years, and to analyze the relationship between skeletal maturation and motor functioning. The skeletal age of 100 children with CP (37 females, 63 males; age 9, 11, or 13 y; 73 ambulant, 27 non-ambulant) was determined over a period of 3 years based on X-rays of the hand (Greulich and Pyle technique). Motor functioning was measured with the Gross Motor Function Measure-66. The skeletal age of females with CP was significantly higher than their chronological age, but this did not apply to males. Longitudinal analysis showed no difference in the course of skeletal age in relation to chronological age over a 3-year period for sex or for level of ambulation. No association was found between changes in skeletal age and changes in gross motor function over the 3-year period. Skeletal age during (pre-)puberty in females with CP is advanced in relation to chronological age. No evidence was found that children with CP are at risk for deterioration in gross motor function as a result of skeletal maturation during puberty.

Physical activity level and related factors in adolescents with cerebral palsy.

The purpose of this study was to describe the physical activity level of adolescents with cerebral palsy (CP) and to investigate the associated factors. The physical activity level was measured by means of a questionnaire filled in by the parents of 72 adolescents with CP (12-16 years of age) and expressed in METs. Older age, female gender, and hip dysplasia were significantly associated with a lower level of physical activity. Eighty-nine percent were not physically active enough according to the Dutch norm. Physical activity needs to be promoted, especially among older adolescents with CP (age 14-16 years), girls, and adolescents with hip dysplasia.