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Chronic disorders are known to have a wide-ranging impact on overall health and family dynamics. The objective of this study was to assess child health and well-being and parental stress in a cohort of school-age children diagnosed before school entry with either global developmental delay or developmental language impairment. In total, 65 children with preschool developmental delay were assessed at school age (mean ± SD age: 7.3 ± 0.7 years) with the Child Health Questionnaire and Parenting Stress Index, with a mean interval between assessment of 3.9 years. Almost all children who completed testing (60/62) continued to show developmental impairments across domains. On the Child Health Questionnaire, children showed the greatest impairment on the mental health scale (median z score: —0.9). The median Child Health Questionnaire psychosocial health score (40.7) was almost 1 SD below established normative values ( P < .001). More than 40% of parents had a Parenting Stress Index above the 85th percentile (clinically significant parenting stress). Using multiple linear regression analysis, high levels of parenting stress were best predicted by a child's Child Health Questionnaire psychosocial health score ( r 2 = 0.49, P < .001). Thus, 4 years after a preschool-age diagnosis of developmental delay, poor psychosocial health was a common comorbidity. Almost half the parents showed clinically significant levels of parenting stress. There is a need to both recognize and provide ongoing social and emotional support for young children diagnosed with developmental disability and their families.

The objective of this study was to characterize participation in leisure activities in children with cerebral palsy (CP) and identify determinants of greater involvement. Ninety-five children of school age (9y 7mo [SD 2y 1mo]) with CP were recruited, and participation was evaluated with the Children's Assessment of Participation and Enjoyment in a subset (67/95; 42 males, 25 females) who could actively participate in completion of the assessment. Most had mild motor dysfunction (Gross Motor Function Classification System: 59% level I, 23% level II, 18% levels III-V) and had a spastic subtype of CP (23 hemiplegia, 17 diplegia, 16 quadriplegia, 11 other). Biomedical, child, family and environmental predictor variables were considered in the analysis. Results demonstrated that these children were actively involved in a wide range of leisure activities and experienced a high level of enjoyment. However, involvement was lower in skill-based and active physical activities as well as community-based activities. Mastery motivation and involvement in rehabilitation services enhanced involvement (intensity and diversity) in particular leisure activities, whereas cognitive and behavioral difficulties, activity limitations, and parental stress were obstacles to participation.

Background: Quality of life is recognized as an important outcome of health services. Ideally, the child’s perspectives should be sought directly to define their quality of life; however, this may be limited by age and cognitive and language abilities. Purpose: In a sample of school-aged children with cerebral palsy (CP), we compared a parent’s perspective of their child’s quality of life with their child’s own perspective, when feasible. Methods: Forty-eight children completed the Pediatric Quality of Life Inventory (PedsQL) measure independently (n = 33/48, 69% Gross Motor Function Classification System (GMFCS) I; n = 6/48, 12% III–V). A parent completed the proxy version and the scores were compared. Results: Intraclass correlation (ICC) coefficients were high for physical (ICC = 0.72, confidence interval [CI]: 0.55–0.83) and moderate for psychosocial (ICC = 0.54, CI: 0.30–0.71) well-being, with the weakest agreement on school functioning and the strongest agreement for ratings of physical health. Parental ratings were more often lower, especially for social functioning, although children rated themselves lower on emotional functioning. Factors associated with a closer agreement between parent–child pairs included older age, male gender, higher social competency, functional abilities, and fewer emotional symptoms (r2 = 0.07–0.30). Conclusion: In children with CP, parents’ ratings of their children’s quality of life are generally comparable as a group to their child’s self-report. Disparities do exist, particularly in psychosocial domains, and, therefore, the child’s own perspective should be considered whenever feasible.

Multimodality-evoked potentials are widely used in newborns to assess the maturation and integrity of the sensory pathways. Reliable normative data are needed to maximize the utility of this technique as a diagnostic and research tool. Several electrophysiologic studies on the maturational changes of the auditory brain-stem response have demonstrated that latency measurements decrease as a function of increasing conceptional age. However, maturational studies of the somatosensory-evoked potential, particularly in low-risk premature infants, are limited. The existing evoked potential literature in healthy newborns proposes that maturation of the central nervous system occurs at a predictable rate, irrespective of a given gestational age at birth. Behavioral studies of premature infants suggest that neurologic development may be altered by early extrauterine exposure. The purpose of this study was to determine whether brain-stem auditory- or somatosensory-evoked potential conduction times were comparable in premature and full-term infants matched for conceptional age. The results of this study suggest that myelination is determined by conceptional age, independent of premature birth. ( J Child Neurol 1990;5:329-335).

Objective To describe developmental and functional outcomes of children with congenital heart defects (CHDs) at school entry after open heart surgery. Study design Infants with CHDs who underwent surgical repair in infancy were recruited and assessed prospectively for developmental progress. At 5 years of age (64.2 ± 11.3 months), 94 subjects were evaluated in a blind fashion by using a variety of standardized measures. Results Mean IQ scores were in the low average range (90-94). Receptive language was in the average range (103.6 ± 14.4). Behavioral difficulties were common (27.1%), with internalizing problems being more frequent. Functional limitations in socialization (93.0 ± 17.1), daily living skills (94.6 ± 16.4), communication (90.0 ± 14.1), and adaptive behavior (92.1 ± 15.8) were noted in 11% to 17% of children. With the Functional Independence Measure for Children, 20% to 22% of subjects were more dependent than their peers in self-care and social cognition, although few (4.5%) had mobility restrictions. Predictors of developmental and functional limitations included: abnormal postoperative neurologic examination, microcephaly, deep hypothermic circulatory arrest time, palliation, acyanotic heart lesion, age at surgery, and maternal education. Conclusions After infant open-heart surgery, children with CHDs may exhibit a range of developmental difficulties at school entry that enhances risk for learning challenges and decreased social participation.

Failure to attain handwriting competency during the school-age years often has far-reaching negative effects on both academic success and self-esteem. This complex occupational task has many underlying component skills that may interfere with handwriting performance. Fine motor control, bilateral and visual–motor integration, motor planning, in-hand manipulation, proprioception, visual perception, sustained attention, and sensory awareness of the fingers are some of the component skills identified. Poor handwriting may be related to intrinsic factors, which refer to the child's actual handwriting capabilities, or extrinsic factors which are related to environmental or biomechanical components, or both. It is important that handwriting performance be evaluated using a valid, reliable, standardized tool combined with informal classroom observation and teacher consultation. Studies of handwriting remediation suggest that intervention is effective. There is evidence to indicate that handwriting difficulties do not resolve without intervention and affect between 10 and 30% of school-aged children. Despite the widespread use of computers, legible handwriting remains an important life skill that deserves greater attention from educators and health practitioners.

To the Editor .— Four years ago we published a study that reported negative developmental sequelae after high doses of sucrose in infants

The objective of this study was to examine occupational therapists' (OT) and physiotherapists' (PT) perceptions regarding waiting time and the quality and quantity of the services they provide for children with disabilities. A survey was sent by post to all paediatric OTs and PTs in Quebec, Canada. A Service Delivery Questionnaire included questions regarding therapist/client characteristics, waiting times and quality and quantity of services provided. The Measure of Processes of Care for Service Providers (MPOC-SP) rated use of family-centred care by responding clinicians. Waiting times were longest for OT services (p

OBJECTIVE. Our goal was to evaluate detailed school-age language, nonverbal cognitive, and motor development in children with developmental language impairment compared with age-matched controls.METHODS. Children with developmental language impairment or normal language development (controls) aged 7 to 13 years were recruited. Children underwent language assessment (Clinical Evaluation of Language Fundamentals-4, Peabody Picture Vocabulary-3, Goldman-Fristoe Test of Articulation-2), nonverbal cognitive assessment (Wechsler Intelligence Scale for Children-IV), and motor assessment (Movement Assessment Battery for Children). Exclusion criteria were nonverbal IQ below the 5th percentile or an acquired language, hearing, autistic spectrum, or neurologic disorder.RESULTS. Eleven children with developmental language impairment (7:4 boys/girls; mean age: 10.1 ± 0.8 years) and 12 controls (5:7 boys/girls; mean age: 9.5 ± 1.8 years) were recruited. Children with developmental language impairment showed lower mean scores on language (Clinical Evaluation of Language Fundamentals-4—developmental language impairment: 79.7 ± 16.5; controls: 109.2 ± 9.6; Goldman-Fristoe Test of Articulation-2—developmental language impairment: 94.1 ± 10.6; controls: 104.0 ± 2.8; Peabody Picture Vocabulary-3—developmental language impairment: 90.5 ± 13.8; controls: 100.1 ± 11.6), cognitive (Wechsler Intelligence Scale for Children-IV—developmental language impairment: 99.5 ± 15.5; controls: 113.5 ± 11.9), and motor measures (Movement Assessment Battery for Children percentile—developmental language impairment: 12.7 ± 16.7; controls: 66.1 ± 30.6) and greater discrepancies between cognitive and language scores (Wechsler Intelligence Scale for Children-IV/Clinical Evaluation of Language Fundamentals-4—developmental language impairment: 17.8 ± 17.8; controls: 1.2 ± 12.7). Motor impairment was more common in children with developmental language impairment (70%) than controls (8%).CONCLUSIONS. Developmental language impairment is characterized by a broad spectrum of developmental impairments. Children identified on the basis of language impairment show significant motor comorbidity. Motor assessment should form part of the evaluation and follow-up of children with developmental language impairment.

There is a critical need to establish cost effective ways to monitor developmental progress of children at risk for developmental disabilities. The Vineland Adaptive Behavior Scale (VABS) is a well-known functional measure used for both clinical and research purposes. The objective of this study was to examine the equivalence reliability of the VABS using two different administration methods; in-person versus telephone interviews. Fifty children with or at-risk for developmental disability were tested (mean age of 77.5 +/- 18.5 months) using both interview formats. Correlations between in-person and telephone interview scores were extremely high for all subdomains including Communication (ICC = 0.99), Daily Living Skills (ICC = 0.98), Socialization (ICC = 0.96), Motor (ICC = 0.98) as well as the Adaptive Behavior Composite score (ICC = 0.99). The ability to collect reliable information on a child's developmental progress using a telephone interview format is critical, given current service delivery constraints.

As part of the implementation of a population-based registry of children with cerebral palsy, caregiver satisfaction with the process by which diagnosis was originally communicated by a professional was assessed. Satisfaction with various aspects of the diagnosis process was assessed using a five-point Likert scale and related to child, family, and situational characteristics. Measures were then correlated with current caregiver stress as measured objectively by the Parenting Stress Inventory. During the registration process, 59 consecutive caregivers (55 mothers) were questioned. Overall, 62% (35/59) were satisfied with the disclosure process, with satisfaction ranging from 69% (41/59-hopefulness) to 92% (54/59-honesty) for professional qualities, and from 61% (36/59-sufficient information provided) to 78% (46/59-understandable) for disclosure content. Satisfaction was related to the quantity and content of information given at the disclosure session. Parenting Stress Inventory scores, both total and for parental distress, correlated significantly with both the severity of the child's cerebral palsy and caregiver satisfaction with varying elements of the disclosure process. Overall caregiver satisfaction with the process by which a diagnosis of cerebral palsy is given appears to be good. Together with the severity of a child's intrinsic cerebral palsy, it appears to relate to later parental adjustment to a setting of chronic disability, suggesting a portal through which improvements in information delivery may result in better familial adaptation to disability.

Background. There has been an increased focus on home care service provision in recent years, yet there are few data available about the provision of home and community occupational therapy for children and youth. Purpose. To evaluate key elements of a service provision model for home care occupational therapy in terms of occupational performance outcomes, perception of care and cost. Methods. Eleven centres in Ontario and Quebec recruited 167 children and youth up to 18 years of age to a before and after study of occupational therapy services in the home and community. Occupational performance, quality of life and costs were measured at baseline and study end. Perception of care was measured at study completion. Results. A statistically and clinically significant improvement in occupational performance was demonstrated (p

Objectives: To determine the association between functional status, measured by the WeeFIM and health-related quality of life (HRQL), measured by the PedsQL4.0 for children with physical disabilities. To explore child, parent and service-related factors associated with each of these measures. Patients: Parents of 115 children (2–5 years) with physical disabilities who were referred to occupational (OT) or physical therapy (PT). Mean age of the children was 3 years 7 months (±10 months), 79 were boys and 67 were diagnosed with global developmental delay. Results: Children had more difficulties with self-care tasks and cognitive abilities, as compared to mobility activities on the WeeFIM. The correlation between total WeeFIM and total PedsQL4.0 was r = 0.39. WeeFIM mobility and self-care quotients were each fairly correlated with PedsQL-Physical Health Summary Score (r s = 0.29 and r s = 0.28 respectively). There was no significant association between WeeFIM cognition quotient and each of PedsQL scores (r s = 0.03–0.05). The receipt of PT services was highly associated (p

The later developmental trajectory of young children diagnosed early with global developmental delay was determined. Using a prospective study, preschool children diagnosed with global developmental delay were systematically reassessed during the early school years with standardized developmental and functional outcome measures (Battelle Developmental Inventory and Vineland Adaptive Behavior Scale). Of an original cohort of 99 children assessed and diagnosed at a mean age of 3.4 ± 1.1 years, 48 were reassessed at a mean age of 7.3 ± 0.9 years. Group performance on the Battelle Developmental Inventory overall was 66.4 ± 4.3 (mean 100 ± 15). Between 75% and 100% of the cohort performed at least 1.5 SD below the normative mean on the individual domains of the Battelle Developmental Inventory. Similarly, the group mean on the Vineland Adaptive Behavior Scale overall was 63.5 ± 20.8 (mean 100 ± 15), with between 61% and 76% of the cohort scoring more than 1.5 SD below the mean on each of the domains. Univariate and multivariate analyses on potential predictor variables identified a lack of an underlying etiology as predictive of poorer performance on the Battelle Developmental Inventory fine motor and motor domains and increasing severity of initial delay as predictive of poorer performance on the Vineland Adaptive Behavior Scale communication domain and overall score. Similarly, maternal employment and paternal postsecondary education improved Vineland Adaptive Behavior Scale communication scores, whereas paternal postsecondary education alone predicted better socialization and total scores on the Vineland Adaptive Behavior Scale. Children with early global developmental delay demonstrate persistent and consistently poor performance across all developmental and functional domains. Few variables are apparent at intake to predict later performance. ( J Child Neurol 2005;20:648—654).

Infants who survive open-heart surgery are at risk for developmental disability, which may impact on the well-being not only of the child, but also the family. The objective of our prospective study, therefore, was to determine the long-term health-related quality of life of children with congenital cardiac malformations following open-heart surgery, and to describe the persisting level of stress in their families. To this end, 49 parents completed the Child Health Questionnaire, the Parenting Stress Index, and the Child Behaviour Checklist as part of a developmental follow-up protocol when their child was 5 years of age. Mean scores on the Child Health Questionnaire were in the normal range, with physical well-being equal to 53.5, psychosocial well-being 50.9, with only 6.4 percent and 8.5 percent of subjects, respectively, falling within the suboptimal range of less than 40. The distribution of scores on the Parenting Stress Index, however, were more variable, with over one-quarter of parents indicating a high level of stress, with almost one-fifth having low levels of stress, and just over half scoring in the normal range, with the group mean being 52.6 plus or minus 32.3. An abnormal neurologic examination before surgery was associated with lower physical health (β equal to −5.5, p equal to 0.02, r2equal to 0.18), whereas lower arterial saturations of oxygen, less than 85 percent preoperatively, was associated with lower psychosocial health (β equal to −6.6, p equal to 0.01, and r2equal to 0.14). The internalizing and externalizing behaviours of the child were significantly correlated with psychosocial well being, with r ranging from −0.32 to −0.52, and p less than 0.05. Parental stress also correlated with psychosocial health (r equal to −0.48 and p equal to 0.0009). Overall, the perception by the parents of the health-related quality of life of their child is favourable 5 years following open-heart surgery during infancy. Many parents, nonetheless, continue to feel either stressed or defensive about their child, particularly if their child exhibits behavioural difficulties. Our findings suggest that strategies need to be considered to enhance family well-being in the planning and delivery of health services to this population at high risk.

Neonatal neurobehavioral assessments describe a newborn's spontaneous behavioural repertoire and observable responses to environmental stimuli. Infant developmental assessments document the range of developmental skills that emerge and develop over the first years of life. This review highlights two neonatal assessments (Einstein Neonatal Neurobehavioral Assessment Scale, Neurobehavioral Assessment of the Preterm Infant) and two infant assessments (Alberta Infant Motor Scale, Test of Infant Motor Performance). A general description of these tests is followed by their content and psychometric properties. These standardized tests of neurologic integrity are useful in characterizing current developmental status and in monitoring change in performance over time.

An estimated 5 to 10% of the pediatric population has a developmental disability. The current strategy to identify these children is through developmental surveillance, a continuous procedure in which the health professional observes the infant, takes a developmental history, and elicits any concerns that the caregiver might have. However, identification of delayed children is ineffective when based solely on routine surveillance. A necessary adjunct is developmental screening: the process of systematically identifying children with suspected delay who need further assessment. Screening tests greatly improve the rate of identification. With the advent of intervention programs and the support of organizations such as the American Academy of Pediatrics, the topic of developmental screening is a timely and essential one. This review aims to describe the properties of screening tests, to evaluate the available tools for developmental screening while providing a representative sample of the currently available developmental tests, and, finally, to evaluate the efficacy of intervention programs, a needed prerequisite to justify screening.

Objectives To evaluate fine motor (FM) and gross motor (GM) function shortly after school entry in children with a preschool diagnosis of developmental language impairment (DLI). Study design A cohort of children (n=70) diagnosed at pre–school age with DLI was reevaluated in elementary school. Language, cognitive, and motor outcomes were assessed through the use of the Battelle Developmental Inventory (BDI). Language was further assessed through the use of the Vineland Adaptive Behavior Scale, Peabody Picture Vocabulary, and Expressive One Word Picture Vocabulary Tests. Performance below −1.5 SD of the normative mean on any test was considered to represent impairment. Results Forty-three children (mean age, 7.4 ± 0.7 years) underwent reassessment at a mean of 3.8 ± 0.7 years after initial preschool assessment. Mean scores for BDI motor domains (FM, 78.3 ± 11.4; GM, 84.9 ± 13.3) fell below normative values. Twenty-two children (52%) had motor impairment (FM, 17 of 42; GM, 15 of 42); 35 of 43 (81%) continued to have language impairment. BDI communication raw scores correlated most strongly with FM (ρ=0.73, P P =.003) raw scores but showed only moderate correlations with cognitive raw scores (ρ=0.41, P =.05). Conclusions Impaired motor function is an important comorbidity in DLI. Factors critical to motor performance may also contribute to language deficits in DLI.

In a prospective study, preschool children diagnosed with developmental language impairment were systematically reassessed during the early school years with standardized developmental (Battelle Developmental Inventory) and functional measures (Vineland Adaptive Behavior Scale). Of an original cohort of 70 children assessed and diagnosed at a mean age of 3.6 +/- 0.7 years, 43 were reassessed at a mean age of 7.4 +/- 0.7 years. Group performance on the Battelle overall was 71.9 +/- 8.2 with the lowest sub-domain score in communication at 69.5 +/- 8.9. On the Battelle, 67% of children fell below the 1.5 standard deviation (S.D.) cutoff signifying significant developmental concerns. Between 36% (gross motor) and 83% (communication) of the cohort performed at least 1.5 S.D. below the normative mean on the individual domains of the Battelle. Seventy-four percent were impaired in two or more domains of the Battelle. The group mean on the Vineland overall was 81.1 +/- 16.9 with between 19% (socialization) to 48% (communication) of the cohort scoring more than 1.5 S.D. below the mean on each of the sub-domains. Almost half of the cohort (20/42, 48%) manifested functional impairment in at least two domains of the Vineland. Univariate and multivariate analysis of potential predictor variables identified only female sex as being predictive of significantly poorer performance on the Vineland communication sub-domain and the Vineland total score. Children with early developmental language impairment demonstrate persistent impairments in developmental and functional skills at school entry not limited to language. Deficits remain especially evident in the communication sub-domain. These results have implications with respect to later prognostication, family counseling, and devising a programmatic approach to this group of children.

This article addresses newly emerging concepts regarding the examination of outcomes in children with cerebral palsy (CP). Three important factors have prompted a change toward a broader approach to outcome measurement: (1) the recent endorsement of the World Health Organization classification scheme of functioning, disability, and health; (2) recognition of the importance of the role of child and environmental factors in modifying outcome; and (3) appreciation of the challenges faced at key transitions during development. Comparison of the literature on outcomes in children with CP published in 2002 with studies published 10 years earlier demonstrates an increased number of studies and a wider range of outcome measures used to characterize the functioning of these children. A better understanding of the extent and nature of the outcomes and their determinants is critical to guide clinical decision making and program planning to maximize community integration, social participation, and overall well-being of the child and family.

Cerebral palsy is an established symptom complex that results from heterogeneous etiologies. Our understanding of the relative contribution of underlying etiologies to the occurrence of cerebral palsy is largely derived from studies lacking systematic neurologic evaluation or the application of contemporary imaging modalities. Throughout a 10-year inclusive period, the case records of all consecutive patients diagnosed with cerebral palsy in a single pediatric neurology practice were reviewed with reference to clinical features and diagnostic yield. A total of 217 cases of cerebral palsy were identified (129 male, 88 female): 77 (35.5%) spastic quadriplegic, 68 (31.3%) spastic hemiplegic, 39 (18%) spastic diplegic, five (2.7%) spastic monoplegic, 12 (5.5%) mixed, 12 (5.5%) ataxic-hypotonic, two (0.9%) dyskinetic, two (0.9%) Worster-Drought syndrome. Overall etiologic yield was 82.0%, varying according to type of cerebral palsy: 50% dyskinetic, 59% diplegia, 80% monoplegia, 80.9% hemiplegia, 90.9% quadriplegia, 91.7% ataxic hypotonia, and 100% mixed/Woster-Drought. The top five etiologic entities identified were periventricular leukomalacia, 24.9%; intrapartum asphyxia, 21.7%; cerebral dysgenesis, 17.1%; intracranial hemorrhage, 12.9%; and vascular, 9.7%. Although a single etiology was apparent in 144 (66.4%) of the cases, multiple etiologies were believed to be contributory in 34 (15.6%) of the cases. The etiologic profile varied according to such features as the type of cerebral palsy, gestational age, and the source (high-risk neonatal population or not) of the patients. Features of the child's cerebral palsy, such as microcephaly, neonatal difficulties, prior or coexisting epilepsy, and high-risk source, were found to be predictive of eventual etiologic yield. This contemporary evaluation of cerebral palsy etiologic yield suggests that it is much higher than previously reported and varies, depending on key clinical features.

Objective: To make evidence-based recommendations concerning the evaluation of the child with a nonprogressive global developmental delay.Methods: Relevant literature was reviewed, abstracted, and classified. Recommendations were based on a four-tiered scheme of evidence classification.Results: Global developmental delay is common and affects 1% to 3% of children. Given yields of about 1%, routine metabolic screening is not indicated in the initial evaluation of a child with global developmental delay. Because of the higher yield (3.5% to 10%), even in the absence of dysmorphic features or features suggestive of a specific syndrome, routine cytogenetic studies and molecular testing for the fragile X mutation are recommended. The diagnosis of Rett syndrome should be considered in girls with unexplained moderate to severe developmental delay. Additional genetic studies (e.g., subtelomeric chromosomal rearrangements) may also be considered in selected children. Evaluation of serum lead levels should be restricted to those children with identifiable risk factors for excessive lead exposure. Thyroid studies need not be undertaken (unless clinically indicated) if the child underwent newborn screening. An EEG is not recommended as part of the initial evaluation unless there are historical features suggestive of epilepsy or a specific epileptic syndrome. Routine neuroimaging, with MRI preferred to CT, is recommended particularly if abnormalities are found on physical examination. Because of the increased incidence of visual and auditory impairments, children with global developmental delay may undergo appropriate visual and audiometric assessment at the time of diagnosis.Conclusions: A specific etiology can be determined in the majority of children with global developmental delay. Certain routine screening tests are indicated and depending on history and examination findings, additional specific testing may be performed.

Rehabilitation specialists are an integral part of the team in the neonatal intensive care unit (NICU). A national survey was conducted to elucidate the current roles of rehabilitation specialists. Occupational therapy (OT), physical therapy (PT), and speech and language pathology (SLP) departments in all Canadian health care institutions with tertiary level NICUs (n = 38) were surveyed by telephone. Results indicate that 16% have no rehabilitation coverage, while 11% receive very limited external services (< 1/month). Over half of the OT and PT departments provide weekly services whereas only 5/38 provide SLP coverage. Service delivery includes assessment and a number of therapeutic interventions. Splinting and feeding are predominantly performed by OT, whereas chest physiotherapy and ROM are carried out primarily by PT. Rehabilitation specialists are actively involved in education and case management. The extent of involvement of rehabilitation specialists was discrepant, and highly associated with the type of facility. Rehabilitation services, when provided, are comprehensive and include evaluation, treatment, teaching, decision-making, and family support.

To determine the prevalence of persistent developmental impairments in children with congenital heart defects and to identify factors that enhance risk for an adverse outcome.Eligible infants (n = 131)2 years of age requiring open heart surgery were recruited prospectively. Subjects were assessed during surgery and again 12 to 18 months later with standardized developmental assessments and formal neurologic examinations.Mean age at follow-up testing was 19.1 +/- 6.6 months. Assessments indicated that 41% had abnormal neurologic examinations. Gross and/or fine motor delays were documented in 42%, and 23% demonstrated global developmental delay. Univariate and multiple regression models identified the following factors increasing the risk for persistent developmental deficits: preoperative and acute postoperative neurodevelopmental status and microcephaly, type of heart lesion, length of deep hypothermic circulatory arrest, age at surgery, and days in the intensive care unit (P.05).Children with congenital heart defects commonly have ongoing neurologic, motor, and developmental deficits well after surgical correction. The cause is multifactorial and includes brain injury before, during, and after heart surgery.

It is increasingly recognized that research is necessary to advance the practice of occupational therapy. The objective of this study was to determine whether occupational therapy departments in Quebec were commonly involved in research, and whether participation varied with the size of department and type of work setting. Secondly, enablers and barriers to participation in research were identified. A random sample of occupational therapy departments, stratified by size, were surveyed by mail. Participation rate was 74.8% (107/143). Participation in research was noted in half of the departments surveyed (51/107), most frequently as collaborator. Involvement in research was associated (p

The aim of this systematic review is to describe participation in social and physical leisure activities among children and adolescents with JIA, as well as identify potential determinants of leisure participation. Methods Electronic databases were systematically searched for articles published up until June 2013 pertaining to participation in leisure activities among youth with JIA and other rheumatic diseases. Studies were included if they measured involvement in either social or physical leisure activities. Selection and quality appraisal of articles were completed independently by two authors. Results Eight hundred and ninety-three articles were found through electronic and reference search. One hundred and nine full articles were reviewed to assess for eligibility. Twelve articles met inclusion criteria and findings were reviewed. Most focused on describing participation in physical rather than social activities. Results suggest that youth with JIA participated less in both social and physical leisure activities as compared to healthy peers, and those with JIA did not meet national recommendations for physical activity. Potential determinants of leisure participation were socio-demographic (age, sex), anthropometric (height, weight) and disease-related (JIA subtype, disease duration, pain, number of swollen or painful joints, stiffness, fatigue, well-being) factors. Conclusion Characterization of leisure activity remains limited and mostly focused on physical activity in JIA. Assessment of more comprehensive outcome measures is warranted to obtain a better description of leisure in this population. Evidence of the influence of contextual factors as potential determinants of involvement in leisure among children with pediatric rheumatologic diseases is needed.

Objective To investigate the relationship between tissue-specific alterations in brain volume and neurobehavioral status in newborns with complex congenital heart defects preoperatively. Study design Three-dimensional volumetric magnetic resonance imaging was used to calculate tissue-specific brain volumes and a standardized neurobehavioral assessment was performed to assess neurobehavioral status in 35 full-term newborns admitted to the hospital before cardiopulmonary bypass surgery. Multiple linear regression models were performed to evaluate relationships between neurobehavioral status and brain volumes. Results Reduced subcortical gray matter (SCGM) volume and increased cerebrospinal fluid (CSF) volume were associated with poor behavioral state regulation (SCGM, P = .04; CSF, P = .007) and poor visual orienting (CSF, P = .003). In cyanotic newborns, reduced SCGM was associated with higher overall abnormal scores on the assessment ( P = .001) and poor behavioral state regulation ( P = .04), and increased CSF volume was associated with poor behavioral state regulation ( P = .02), and poor visual orienting ( P = .02). Conversely, acyanotic newborns showed associations between reduced cerebellar volume and poor behavioral state regulation ( P = .03). Conclusion Abnormal neurobehavior is associated with impaired volumetric brain growth before open heart surgery in infants with complex congenital heart defects. This study highlights a need for routine preoperative screening and early intervention to improve neurodevelopmental outcomes.

Background/Purpose: Children with juvenile idiopathic arthritis may be less involved in leisure activities compared to their healthy peers in part due to disease related factors such as pain, joint stiffness and tenderness. The main purpose of our study was to describe involvement in leisure activities, as well as to identify potential socio-demographic, disease-related, personal and environmental determinants. Methods: Ninety three children and youth aged 8 to 18 years diagnosed with juvenile idiopathic arthritis (JIA) and their families participated in this cross-sectional study. Children and youth were administered the Children's Assessment of Participation and Enjoyment (CAPE), which measures involvement in leisure activities (recreation, physical, social, skill-based, self-improvement). The disease characteristics were abstracted from the child's medical file (JIA sub-type, active joint count, age of diagnosis), pain perception, functional status, motivation, self-perception and perceived social support were obtained through self-report. Parents completed questionnaires on socio-demographic data, as well as on family function and environmental barriers. Multiple linear regression was used for data analysis. Results: The leisure activities completed by most participants (>90%) were playing computer/video games, watching television, hanging out with friends and doing homework. Least popular activities were (h10%) martial arts, gymnastics and horseback riding. The level of enjoyment was highest for social activities (mean: 4.2+0.5). Involvement in active physical activities was negatively associated with the presence of active disease (β = −0.385, p = 0.028). However a higher level of perceived athletic competence was associated with greater intensity in active physical activities (β = 0.261, p = 0.037). Higher environmental barrier scores were negatively associated with involvement in social (β = −0.222, p = 0.023) leisure activities. Conclusion: Disease activity may dissuade children and youth from participating in more active pursuits, which places them at greater risk for adopting sedentary lifestyles. There is evidence that contextual factors (personal and environmental) influence leisure participation. The identification of determinants of leisure activities in children and youth with arthritis may allow healthcare professionals to assess children's health needs with more precision and promote a healthier lifestyle.

With the recent dramatic decline in mortality rates of infants undergoing open-heart surgery (OHS), there is growing concern regarding neurodevelopmental sequelae. Outcome studies have primarily focused on delineating developmental impairments; however, the impact on function and family burden has not been investigated. The objective of this study was to determine the prevalence of functional limitations and burden of care of young children with congenital heart defects (CHD) after OHS.Study Design. One hundred thirty-one eligible infants with CHD undergoing their first OHS were recruited prospectively. Patients were assessed pre- and postoperatively, and again 12 to 18 months after surgery. Functional assessments included the WeeFIM (Functional Independence Measure) and the Vineland Adaptive Behavior Scale.Results. For the WeeFIM, mean quotients were 84.3 ± 23.8 (self-care), 77.2 ± 30.0 (mobility), and 92.4 ± 27.8 (cognition), with an overall quotient of 83.8 ± 23.4. Only 21% of the cohort was functioning within their expected age range. Moderate disability was noted in 37%, while only 6% demonstrated a severe disability. For the Vineland scale, mean score for daily living skills was 84.4 ± 17.6, and 80.3 ± 15.9 for socialization. Functional difficulties in daily living skills were documented in 40%, whereas >1/2 had poor socialization skills. Factors enhancing risk for functional disabilities included perioperative neurodevelopmental status, microcephaly, length of deep hypothermic circulatory arrest, length of stay in the intensive care unit, age at surgery, and maternal education.Conclusions. The high prevalence of functional limitations and dependence in activities of daily living is currently underappreciated in the clinical setting, and deserves additional attention by pediatricians and developmental specialists.

Neurologic status is of concern in infants with congenital heart defects undergoing open heart surgery. The association between perioperative electroencephalography (EEG) with acute neurologic status and subsequent outcome was examined in a cohort of 60 infants. Preoperative EEG and neurologic examinations were performed within 1 to 2 days prior to surgery (n = 27) and postoperatively (n = 47). Prior to surgery, 15 of 27 infants had normal EEG, whereas 5 had epileptiform activity and 9 had disturbances in background activity that were primarily moderate (8/9) and diffuse (7/9). Postoperatively, only 17 of 47 infants had normal recordings. Newborns (

Prediction of outcome for neonatal intensive care unit graduates is clinically useful to counsel families effectively and target those who may benefit from early interventions. Evoked potentials have proven prognostic value of neurologic outcomes in early childhood; however, their long-term predictive validity remains to be determined. The objective of this prospective study was to determine the long-term predictive value of three neonatal neurologic assessments: brainstem auditory evoked potentials, somatosensory evoked potentials, and the Einstein Neonatal Neurobehavioral Assessment Scale. Seventy-eight high-risk newborns and 28 healthy controls were recruited and were assessed in the newborn period using these tests. At 8 to 9 years of age, 42 subjects and 13 controls were re-evaluated for developmental progress using a range of psychologic, sensorimotor, and neurologic measures. Findings indicated that the somatosensory evoked potential was most accurate at predicting outcome at school age, with high specificity (83-100%) across all domains tested and good sensitivity (80-100%) for intellectual performance and sensorimotor abilities. The brainstem auditory evoked potential was limited by false-negatives, whereas the neonatal neurobehavioral assessment yielded many false-positives. This study provides new evidence that associations between neonatal somatosensory evoked potentials and developmental sequelae continue to be significant at school age. (J Child Neurol 2000;15:645-651).

To determine the etiologic yield in young children with single domain developmental delay (either developmental language disorder or isolated motor delay) after a specialty diagnostic evaluation.During an 18-month period, all children5 years of age, who were consecutively referred to pediatric neurology or developmental pediatric clinics at a single tertiary pediatric center, were prospectively enrolled. Etiologic yield was determined after completion of clinical assessments and selected laboratory studies requested by the evaluating physician.Seventy-two children (60 boys) were found to have a developmental language disorder, and 22 children (11 boys) had isolated motor delay, of whom 6 had an associated diagnosis of cerebral palsy. An etiologic diagnosis was rarely made in the children with developmental language disorder (3/72, 4.1%). Laboratory investigations (metabolic, cytogenetic, imaging), aside from audiometry, were uniformly uninformative. In those children with isolated motor delay, an etiology was apparent in more than half (13/22, 59%). Slightly more than half (7/13, 54%) of etiologies identified in this group were potentially preventable. Successful etiologic determination in children with motor delay often had an impact on recurrence risk estimation, medical management, or specific therapy offered (8/13, 62%). The presence of physical findings on initial assessment was found to be highly predictive of successful etiologic determination in children with isolated motor delay (13/17 vs 0/5, P =.002).Etiologic yield differs substantially according to the subgroup of single domain developmental delay.

Background: Neurodevelopmental disabilities in children with congenital heart defects (CHDs) have been primarily attributed to intraoperative events without consideration of preoperative and postoperative factors. Objective: To describe the preoperative and postoperative neurodevelopmental status of newborns and infants with CHDs. Study design: One hundred thirty-one children (56 newborns and 75 infants) were evaluated before and after surgery by using standardized neurobehavioral (newborn) and motor assessments (infant) and neurologic examinations. Results: In newborns, neurobehavioral abnormalities were documented in >50% before surgery, with abnormalities persisting in most after surgery. In infants, neurodevelopmental abnormalities were observed in 38% before surgery. There was a significant association between preoperative and postoperative neurodevelopmental status, with status remaining unchanged in most. Newborns with acyanotic heart lesions were more likely to demonstrate neurologic compromise than those with cyanotic defects. For infants, arterial oxygen saturations

The objective of this survey was to describe assessment and treatment approaches commonly used by occupational therapists for children exhibiting handwriting and related fine motor difficulties. Secondarily, the application of weights as a treatment modality was also explored. Fifty experienced paediatric occupational therapists from Ontario (46%), Quebec (22%) and six other Canadian provinces, were surveyed by telephone. The majority of therapists indicated that they evaluated gross/fine motor and perceptual skills, motor planning, quality of movement and sensory functioning for this population, while psychosocial and environmental factors were often not formally evaluated. Evaluations most commonly utilized included the Beery, Bruininks-Oseretsky and Gardner Tests. Standardized handwriting assessments were rarely employed. All used an eclectic treatment approach with sensorimotor most frequently selected (90%). Work setting and years of experience did not influence the treatment approach favoured.

The pediatric neurologist is often requested to predict the neurologic outcome in an uncertain situation. A common and problematic clinical setting in which this occurs is the asphyxiated term newborn. This report reviews the predictive tools available for prognostication in this situation and formulates a practical paradigm that the authors hope will improve predictive accuracy and lessen uncertainty in this setting.

Recent advances for infants requiring early open heart surgery have resulted in a dramatic decline in mortality and severe morbidity. The developmental progress of these new survivors is currently being defined. Causes contributing to brain injury are multifactorial, and may involve, preoperative, intraoperative, and postoperative events. Before surgery, these children often exhibit hypotonia, poor state regulation, microcephaly, and developmental delays. These findings are particularly prevalent in newborns. In the acute postoperative period, neurodevelopmental dificits continue to manifest clinically. Long-term follow-up studies indicate that subtle neurological deficits and global developmental lags are characteristic of this population. Overall, severe neurological sequelae are uncommon; however, mild to moderate developmental disabilities are prevalent. Functional limitations, academic achievements, and health-related quality of life are areas that deserve further attention.