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The Manual Ability Classification System (MACS) has been developed to classify how children with cerebral palsy (CP) use their hands when handling objects in daily activities. The classification is designed to reflect the child's typical manual performance, not the child's maximal capacity. It classifies the collaborative use of both hands together. Validation was based on the experience within an expert group, a review of the literature, and thorough analysis of children across a spectrum of function. Discussions continued until consensus was reached, first about the constructs, then about the content of the five levels. Parents and therapists were interviewed about the content and the description of levels. Reliability was tested between pairs of therapists for 168 children (70 females, 98 males; with hemiplegia [n=52], diplegia [n=70], tetraplegia [n=19], ataxia [n=6], dyskinesia [n=19], and unspecified CP [n=2]) between 4 and 18 years and between 25 parents and their children's therapists. The results demonstrated that MACS has good validity and reliability. The intraclass correlation coefficient between therapists was 0.97 (95% confidence interval 0.96–0.98), and between parents and therapist was 0.96 (0.89–0.98), indicating excellent agreement.

Americans' perceptions of childhood disability have changed dramatically over the past century, as have their ideas about health and illness, medical developments, threats to children's health and development, and expectations for child functioning. Neal Halfon, Amy Houtrow, Kandyce Larson, and Paul Newacheck examine how these changes have influenced the risk of poor health and disability and how recent policies to address the needs of children with disabilities have evolved. The authors examine the prevalence in the United States of childhood disability and of the conditions responsible for impairment, as well as trends in the prevalence of chronic conditions associated with disability. They find that childhood disability is increasing and that emotional, behavioral, and neurological disabilities are now more prevalent than physical impairments. They stress the importance of, and lack of progress in, improving socioeconomic disparities in disability prevalence, as well as the need for better measures and greater harmonization of data and data sources across different child-serving agencies and levels of government. They call on policy makers to strengthen existing data systems to advance understanding of the causes of childhood disabilities and guide the formulation of more strategic, responsive, and effective policies, programs, and interventions. The authors offer a new and forward-looking definition of childhood disability that reflects emerging and developmentally responsive notions of childhood health and disability. They highlight the relationship between health, functioning, and the environment; the gap in function between a child's abilities and the norm; and how that gap limits the child's ability to engage successfully with his or her world. Their definition also recognizes the dynamic nature of disability and how the experience of disability can be modified by the child's environment.

The aim of this study was to validate the expanded and revised Gross Motor Function Classification System (GMFCS‐E&R) for children and youth with cerebral palsy using group consensus methods. Eighteen physical therapists participated in a nominal group technique to evaluate the draft version of a 12‐ to 18‐year age band. Subsequently, 30 health professionals from seven countries participated in a Delphi survey to evaluate the revised 12‐ to 18‐year and 6‐ to 12‐year age bands. Consensus was defined as agreement with a question by at least 80% of participants. After round 3 of the Delphi survey, consensus was achieved for the clarity and accuracy of the descriptions for each level and the distinctions between levels for both the 12‐ to 18‐year and 6‐ to 12‐year age bands. Participants also agreed that the distinction between capability and performance and the concept that environmental and personal factors influence methods of mobility were useful for classification of gross motor function. The results provide evidence of content validity of the GMFCS‐E&R. The GMFCS‐E&R has utility for communication, clinical decision making, databases, registries, and clinical research.

Schools are salient locations for children with disabilities to accrue physical activity (PA) and to diminish sedentary time (ST). We examined seasonal variation in accelerometer-assessed PA and ST among children with disabilities during the school day in three school settings (physical education (PE) lessons, recess and lunchtime). Children (n = 270) from 13 special schools for those with five disability types (visual impairments, hearing impairments, physical disabilities, intellectual disabilities (ID), and social development problems) participated. Their PA and ST were assessed during three winter and three summer school days using accelerometry. Linear mixed models were performed to determine seasonal variation in the proportion of time they spent in moderate-to-vigorous physical activity (MVPA) and ST in the three settings. On average, the children spent 4.5% (18.6 min) and 4.0% (15.6 min) in MVPA at school during winter and summer days, respectively. They were more physically active during winter (especially during recess and lunchtime), but there were no seasonal differences for ST. Thus, children’s year-round engagement in PA needs to be promoted, especially during summer.

Background Duchenne muscular dystrophy (DMD) is characterized by muscle damage and progressive loss of muscle function in male children. DMD is one of the most devastating genetically linked neuromuscular diseases for which there is currently no cure. Most clinical studies for DMD utilize a standard protocol for measurement exploring pathophysiology, muscle strength and timed tasks. However, we propose that examining broader components of health as emphasized by the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) may be of great value to children and their families, and important outcomes for future clinical trials. Methods Fifty boys with DMD and 25 unaffected age-matched boys completed two self-report measures: the Children’s Assessment of Participation and Enjoyment and the Pediatric Quality of Life Inventory TM 4.0. We investigated differences between the two groups with regard to participation in life activities and perceived quality of life (QoL). Additionally, we compared participation in activities and QoL in both cohorts of younger and older boys. Results Participation in physical activities was significantly lower in boys with DMD than unaffected boys. Perceived QoL was markedly diminished in children with DMD relative to unaffected controls, except in the emotional domain. The amount of time boys engage in an activity, as well as participation in social activities, declined for our older boys with DMD but no changes were observed for our older unaffected boys. For both groups, QoL remained constant over time. Conclusions The ICF-CY provides a conceptual framework and specific terminology that facilitates investigation of the consequences of impairment in children and youth. Our study is one of the first to explore participation in a cohort of boys with DMD. It was not surprising that activities of choice for boys with DMD were less physical in nature than unaffected boys their age, but the consequences of less social engagement as the boys with DMD age is of great concern. Results from our study underscore the need to further evaluate activities that children elect to participate in, with special emphasis on facilitators and barriers to participation and how participation changes throughout the course of a disease.

Understanding family priorities for children and youth with cerebral palsy is essential for family-centered service. The purposes of this study were: (1) to identify family priorities for activity and participation in children and youth with cerebral palsy and (2) to determine differences based on age and Gross Motor Functional Classification System (GMFCS) level. Five hundred eighty-five children and youth with cerebral palsy and their caregivers participated at regional children's hospitals. The children and youth were 2 to 21 years of age; 56% were male, and 44% were female. Their caregivers, predominantly mothers (80%), had a mean age of 40.3 years (SD=9.3). The Canadian Occupational Performance Measure was administered to caregivers to identify their priorities for their children. The priorities were coded into 3 categories (daily activities, productivity, and leisure) and 13 subcategories. The GMFCS levels were determined by assessors who met the criterion for reliability. Friedman and Kruskal-Wallis one-way analyses of variance were used to examine differences in priorities. Parents of children in all age groups and GMFCS levels II to V identified more priorities for daily activities. Parents of school-aged children and youth had more priorities for productivity than parents of younger children. For parents of children in all age groups and motor function levels, self-care was the most frequent priority subcategory. Sixty-one percent of parents identified at least one priority related to mobility. The study did not include qualitative analysis of priorities of parents. Parents' priorities for their children and youth with cerebral palsy differed depending on age and gross motor function level; however, the most frequent priority for all age groups was daily activities. Interviews with families are recommended for identifying outcomes for activity and participation and developing an intervention plan.

Prevention of visual impairment and blindness in childhood is an international priority. However, many countries do not have contemporary information about incidence and causes, from which the scope and priorities for prevention and treatment can be identified. In the UK, children aged younger than 16 years newly diagnosed with severe visual impairment or blindness (SVI/BL, WHO criteria) during 2000 were identified through national active surveillance schemes in ophthalmology and paediatrics. From these data, we calculated yearly age-group specific incidence and cumulative incidence. Causes were classified by the anatomical site or sites affected and by timing of the insult or insults and causal factors, where known. Of 439 newly diagnosed children, 336 (77%) had additional non-ophthalmic disorders or impairments (SVI/BL plus). Total yearly incidence was highest in the first year of life, being 4·0 (95% CI 3·6–4·5) per 10 000, with a cumulative incidence by 16 years of age of 5·9 (5·3–6·5) per 10 000. 10% (44) of all children died within 1 year of diagnosis of blindness. Prenatal causal factors affected 61% (268) of children, with perinatal or neonatal and childhood factors each affecting 18% (77). Incidence and causes varied with presence of non-ophthalmic impairments or disorders, birthweight, and ethnic orgin. At least 75% (331) of children had disorders that were neither potentially preventable nor treatable, with current knowledge. Severe visual impairment and blindness in childhood in the UK is more common, occurs more frequently in the context of complex non-ophthalmic impairments, and has greater associated mortality, than previously assumed. An increased rate in children of low birthweight and from ethnic minority groups, together with the observed diversity and complexity of the causes, reflect recent secular changes in the population at risk, specific risk factors, and strategies available for treatment.

Through social and community participation, children and youth with cerebral palsy (CP) form friendships, gain knowledge, learn skills, express creativity, and determine meaning and purpose in life. The purposes of this study were: (1) to determine whether social and community participation of children and youth with CP differ based on age, sex, and gross motor function, and (2) to identify the types of activities in which social and community participation are highest. A prospective cross-sectional analytic design was used. The participants were a sample of convenience of 291 children (6-12 years of age) and 209 youth (13-21 years of age) with CP (55.4% males, 44.6% females) receiving services from 7 children's hospitals. Participants completed the Children's Assessment of Participation and Enjoyment (CAPE) by structured interview. Gross Motor Function Classification System (GMFCS) level was determined by the researchers. Youth did a higher percentage of activities with friends and others and outside the home than children. Children and youth in level I did a higher percentage of activities with friends and others compared with children and youth in levels II and III and in levels IV and V. Children and youth in level I and in levels IV and V did a higher percentage of activities outside the home than children and youth in levels II and III. Differences were not found between females and males. The percentage of activities done with friends and others and outside the home was highest for physical and skill-based activities. Findings cannot be attributed only to GMFCS level. The ability to walk without restrictions is desirable for social and community participation. For children and youth with CP who have limitations in mobility, physical therapists have roles as consultants for accessibility, activity accommodations, and assistive technology and as advocates for inclusive environments.

To examine the impairments, activity limitations, and participation restrictions in children with spastic unilateral and bilateral cerebral palsy (CP). We investigated the relationship between these factors according to the international classification of functioning, disability, and health (ICF) model. Methods: This prospective cross sectional study included 60 children aged between 4-18 years with spastic CP (30 unilateral, 30 bilateral involvement) classified as Levels I and II on the gross motor function classification system. Children had been referred to the Pediatric Rehabilitation Unit in the Department of Physiotherapy and Rehabilitation, Hacettepe University, Ankara, Turkey between March 2014 and March 2015. The Physician Rating scale was used to assess body functions and structures. The Gillette Functional Assessment Questionnaire 22-item skill set, Pediatric Functional Independence Measure, and Pediatric Outcomes Data Collection Instrument were used to assess activity and participation levels. Results: There was a significant positive correlation between impairments and activity limitations (r=0.558; p=0.000), as well as between activity limitations and participation restrictions (r=0.354, p=0.005). Conclusion: These results show that activity limitations in children with unilateral and bilateral ambulatory CP may be related to their impairments and participation restrictions, although the sample size of our study is not large enough for generalizations. Overall, our study highlights the need for up-to-date, practical evaluation methods according to the ICF model.

To determine the frequency and predictors of sleep disorders in children with cerebral palsy (CP) we analyzed the responses of 173 parents who had completed the Sleep Disturbance Scale for Children. The study population included 100 males (57.8%) and 73 females (42.2%; mean age 8y 10mo [SD 1y 11mo]; range 6y–11y 11mo). Eighty-three children (48.0%) had spastic diplegia, 59 (34.1%) congenital hemiplegia, 18 (10.4%) spastic quadriplegia, and 13 (7.5%) dystonic/dyskinetic CP. Seventy-three children (42.2%) were in Gross Motor Function Classification System Level I, 33 (19.1%) in Level II, 30 (17.3%) in Level III, 23 (13.3%) in Level IV, and 14 (8.1%) in Level V. Thirty children (17.3%) had epilepsy. A total sleep problem score and six factors indicative of the most common areas of sleep disorder in childhood were obtained. Of the children in our study, 23% had a pathological total sleep score, in comparison with 5% of children in the general population. Difficulty in initiating and maintaining sleep, sleep–wake transition, and sleep breathing disorders were the most frequently identified problems. Active epilepsy was associated with the presence of a sleep disorder (odds ratio [OR]=17.1, 95% confidence interval [CI] 2.5–115.3), as was being the child of a single-parent family (OR=3.9, 95% CI 1.3–11.6). Disorders of initiation and maintenance of sleep were more frequent in children with spastic quadriplegia (OR=12.9, 95% CI 1.9–88.0), those with dyskinetic CP (OR=20.6, 95% CI 3.1–135.0), and those with severe visual impairment (OR=12.5, 95% CI 2.5–63.1). Both medical and environmental factors seem to contribute to the increased frequency of chronic sleep disorders in children with CP.