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Aim: To identify and provide a descriptive overview of the development of children, adolescents, and young adults with cerebral palsy (CP) in longitudinal studies; and map areas of focus according to the components of the World Health Organization's International Classification of Functioning, Disability, and Health (ICF). Method: Longitudinal studies of the development of children, adolescents, and/or young adults with CP were included in this scoping review. A search for eligible studies was conducted in the databases MEDLINE, PubMed, LILACS, EMBASE, Cochrane, CINAHL, and Scopus, and was restricted to the years 2002 to 2022. All outcome measures of the studies were classified into ICF components. Results: In the 56 studies included, there were 19 438 participants, involving mainly children, followed by adolescents, and lastly young adults. All components of the ICF were investigated and many studies reported outcomes in more than one component. Activity was the most investigated (67.9%; n = 38 studies), followed by body functions and structures (42.9%; n = 24 studies). Participation (14.2%; n = 8 studies) and environmental factors (3.6%; n = 2 studies) were the least studied. None of the studies investigated personal factors as an outcome. Interpretation: This scoping review provides an overview of studies on the development of children, adolescents, and young adults with CP, using the ICF framework, identifying current areas of focus and gaps in the research. Future studies should target participation, contextual factors, and the transition into adulthood. What this paper adds: The International Classification of Functioning, Disability, and Health can be used to map a range of outcomes through developmental studies.The main outcomes investigated in children with cerebral palsy were activity, and body functions and structures.Little has been explored in participation and contextual factors outcomes over time.The main classification used to stratify the participants was the Gross Motor Function Classification System. [ABSTRACT FROM AUTHOR]

Aim: To investigate the relationships among the Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), and Communication Function Classification System (CFCS) in children with cerebral palsy (CP). Method: Using questionnaires describing each scale, mothers reported GMFCS, MACS, and CFCS levels in 222 children with CP aged from 2 to 17 years (94 females, 128 males; mean age 8y, SD 4). Children were referred from pediatric developmental/behavioral, psychiatry, and child neurology clinics, in the USA, for a case-control study of the etiology of CP. Pairwise relationships among the three systems were assessed using Spearman's correlation coefficients (r[subscript s]), stratifying by age and CP topographical classifications. Results: Correlations among the three functional assessments were strong or moderate. GMFCS levels were highly correlated with MACS levels (r[subscript s] = 0.69) and somewhat less so with CFCS levels (r[subscript s] = 0.47). MACS and CFCS were also moderately correlated (r[subscript s] = 0.54). However, many combinations of functionality were found. Of the 125 possible combinations of the three five-point systems, 62 were found in these data. Interpretation: Use of all three classification systems provides a more comprehensive picture of the child's function in daily life than use of any one alone. This resulting functional profile can inform both clinical and research purposes.

This article reports on the findings of a qualitative study about the experiences and perceptions of adolescents with cerebral palsy (CP) in relation to social participation. A phenomenological approach was used to interview 10 adolescents with CP, 17 to 20 years of age, selected using purposeful sampling. An iterative process of data collection and analysis resulted in four themes about social participation. The themes of "experience, barriers, and supports", and "tradeoffs" supported the current view of participation as a dynamic interaction between person and environment. The fourth theme of "making choices" described the unique challenges facing adolescents with CP in terms of deciding what was most important and meaningful to them now and in their future. Health care professionals can support adolescents as they develop the capacity to make their own decisions during the transition to adult living by ensuring that assessments and interventions address social participation. (Contains 2 tables and 1 figure.)

The purpose of this cross-sectional study was to determine what participation issues are important to adolescents with cerebral palsy (CP). Two hundred and three adolescents with CP (mean age 16.0 [plus or minus] 1.8 years) were assessed using the Canadian Occupational Performance Measure (COPM). This was done through semistructured interviews by trained physical and occupational therapists. Adolescents responded either directly (n = 144) or through a parent or a caregiver (n = 59) if they were unable to communicate. Issues were extracted from completed questionnaires and coded under three COPM categories (self-care, productivity, and leisure) and 16 subcategories. There was no association between the total number of issues identified and gender (p = 0.99), age (p = 0.88), type of respondent (adolescents versus parent) (p = 0.27), Gross Motor Function Classification System (GMFCS) level (p = 0.93), or 66-item Gross Motor Function Measure (GMFM-66) score (p = 0.45). The issues identified most frequently were related to active leisure (identified by 57% of participants), mobility (55%), school (48%), and socialization (44%). Interventions aimed at improving participation among adolescents with physical disabilities, such as CP, should be directed towards these four key areas. Health care professionals should also recognize and consider the interaction of person and environment when addressing issues related to participation. (Contains 4 tables.)

Aim: The purpose of this study was to create and validate the Communication Function Classification System (CFCS) for children with cerebral palsy (CP), for use by a wide variety of individuals who are interested in CP. This paper reports the content validity, interrater reliability, and test-retest reliability of the CFCS for children with CP. Method: An 11-member development team created comprehensive descriptions of the CFCS levels, and four nominal groups comprising 27 participants critiqued these levels. Within a Delphi survey, 112 participants commented on the clarity and usefulness of the CFCS. Interrater reliability was completed by 61 professionals and 68 parents/relatives who classified 69 children with CP aged 2 to 18 years. Test-retest reliability was completed by 48 professionals who allowed at least 2 weeks between classifications. The participants who assessed the CFCS were all relevant stakeholders: adults with CP, parents of children with CP, educators, occupational therapists, physical therapists, physicians, and speech-language pathologists. Results: The interrater reliability of the CFCS was 0.66 between two professionals and 0.49 between a parent and a professional. Professional interrater reliability improved to 0.77 for classification of children older than 4 years. The test-retest reliability was 0.82. Interpretation: The CFCS demonstrates content validity and shows very good test-retest reliability, good professional interrater reliability, and moderate parent-professional interrater reliability. Combining the CFCS with the Gross Motor Function Classification System and the Manual Ability Classification System contributes to a functional performance view of daily life for individuals with CP, in accordance with the World Health Organization's International Classification of Functioning, Disability and Health.

Aim: The aim of this study was to describe and identify factors associated with motivation in children with cerebral palsy (CP). Method: Children with CP were recruited for this cross-sectional study. Children were assessed using the Leiter Intelligence Test, the Gross Motor Function Measure, and the Vineland Adaptive Behavior Scale. Parents completed the Dimensions of Mastery Questionnaire (DMQ) and questionnaires on demographics, child behaviour, and family functioning. Results: The parents of 74 children (46 males, 28 females; mean age 9y 2mo, SD 2y 1mo, range 5y 10mo-12y 11mo) completed the DMQ. Just over half of the children (39/74) were classified at Gross Motor Function Classification System (GMFCS) level I, with 13 classified at GMFCS level II, one at level III, six at level IV, and 14 at level V; one child was not classified. The most common diagnoses were spastic hemiplegia and quadriplegia (23 each), followed by diplegia (14). The highest motivation scores were obtained for the dimensions of mastery pleasure and social persistence and the lowest for persistence with motor or cognitive tasks. Age and sex were not predictive of scores on the DMQ. Higher IQ (r = 0.41), better motor ability (r = 0.43), and fewer limitations in self-care, communication, and socialization (r = 0.44-0.53) were positively associated with motivation total score. A negative impact of the child's disability on the family was associated with lower motivation (r = -0.44). Positive social behaviours were positively correlated with motivation (r = 0.38-0.66), whereas hyperactivity and peer problems were negatively associated. Interpretation: High motivation was associated with fewer activity limitations and behavioural problems and reduced family burden. Low motivation may adversely influence a child's functional potential and the effectiveness of interventions. Strategies focusing on the child, peers, adults, or activities are proposed to enhance the children's motivation to engage in more challenging activities

Aim: Our aim was to describe how the probability of walking, wheeled mobility, and assisted mobility changes with environmental setting and age in children and adolescents with cerebral palsy (CP). Method: The parents of a population-based sample of 642 children and adolescents (360 males, 282 females; age range 16mo-21y) reported their children's mobility at home, school, and outdoors at 6- or 12-month intervals a mean of 5.2 times. Generalized mixed-effects analyses were used to model the probabilities. Results: By age 3 years, children with motor function classified as level I according to the Gross Motor Function Classification System (GMFCS) walked in all three settings. Children/adolescents classified as level V used assisted mobility, with a small number using wheeled mobility. In the case of children classified as GMFCS level II, the probability of walking varied with the environmental setting, which, at age 18, is outdoors 90% of the time. Among children classified as GMFCS level III, the probability of walking was highest at age 9 at school (68%), and at age 18 was approximately 50% in all three settings. Among children/adolescents rated as GMFCS level IV, the probability of wheeled mobility increased with age and, at age 18, 57% of mobility took place outdoors. Interpretation: The results provide evidence that age and environmental setting influence method of mobility of children/adolescents with CP. The method that is preferred in one setting may not be preferred in another setting or at another age. (Contains 4 figures.)

Aim: Our aim was to develop an outcome measure, called Focus on the Outcomes of Communication Under Six (FOCUS), that captures real-world changes in preschool children's communication. Conceptually grounded in the World Health Organization International Classification of Functioning, Disability and Health framework, the FOCUS items were derived from observations of change provided by parents and clinicians after speech-language therapy. Method: Participating families (n = 165) were drawn from a convenience sample at partner institutions in Ontario, Newfoundland and Labrador, and Nova Scotia. All children had speech, language comprehension, and/or language production disorders and were receiving speech-language therapy. The age of the children ranged from 1 year 2 months to 5 years 6 months (mean = 3.8y; SD = 0.91y), and 119 children were male. Three test phases were completed. The measure was revised according to item analysis and parent/clinician feedback after phase 1 (n = 74) and phase 2 (n = 65). In phase 3 (n = 26), the Pediatric Quality of Life Inventory (PedsQL), a health-related quality of life measure, was added to establish construct validity. Results: In phase 1, item analysis revealed high internal consistency for both parents (Cronbach's alpha = 0.87) and clinicians (Cronbach alpha = 0.97). These values indicated redundancy, so 31 items were cut. Five items for young children were added. In phase 2, internal consistency remained high for both parents (Cronbach alpha = 0.98) and clinicians (Cronbach alpha = 0.83), indicating redundancy of items. Twenty-seven items were removed. In phase 3, parents and clinicians reliably scored the FOCUS in 10 minutes. They stated that it provided an accurate snapshot of the child's communication. Internal consistency for parents remained high (Cronbach alpha = 0.96). Children with higher FOCUS scores at the end of treatment had higher PedsQL total scores (r = 0.466, p = 0.029). Interpretation: The FOCUS is a usable measure of a child's ability to communicate and participate in his or her community. It demonstrates high internal consistency and construct validity. (Contains 2 figures.)

This paper reports the construction of gross motor development curves for children and youth with cerebral palsy (CP) in order to assess whether function is lost during adolescence. We followed children previously enrolled in a prospective longitudinal cohort study for an additional 4 years, as they entered adolescence and young adulthood. The resulting longitudinal dataset comprised 3455 observations of 657 children with CP (369 males, 288 females), assessed up to 10 times, at ages ranging from 16 months to 21 years. Motor function was assessed using the 66-item Gross Motor Function Measure (GMFM-66). Participants were classified using the Gross Motor Function Classification System (GMFCS). We assessed the loss of function in adolescence by contrasting a model of function that assumes no loss with a model that allows for a peak and subsequent decline. We found no evidence of functional decline, on average, for children in GMFCS Levels I and II. However, in Levels III, IV, and V, average GMFM-66 was estimated to peak at ages 7 years 11 months, 6 years 11 months, and 6 years 11 months respectively, before declining by 4.7, 7.8, and 6.4 GMFM-66 points, in Levels III, IV, and V respectively, as these adolescents became young adults. We show that these declines are clinically significant.

Parents in 16 families of children with autism spectrum disorders or Down syndrome participated in a qualitative study examining family (i.e., all caregivers in the home) belief systems. All families had children who had recently entered elementary school or who were in the early years of high school. As a result of their experiences, families reported becoming more certain about what matters. Families adopted perspectives of optimism, acceptance, and appreciation, and of striving to change the environment or to meet their children's needs as well as possible. These perspectives provided families with a sense of hope, meaning, and control over their situations. The findings indicate the strengths and resilience of families in the face of life's adversities. Implications for families and service providers are discussed. (Contains 3 tables.)

The purpose of this study was to describe how youth with cerebral palsy experience mobility in their daily lives using a phenomenological approach. The participants were 10 youth with cerebral palsy, 17 to 20 years of age, selected using purposeful sampling with maximum variation strategies. A total of 14 interviews were completed. Transcripts were analyzed for key concepts and themes. Credibility was established through triangulation of researchers and member checking. Participants viewed mobility as important for "self-sufficiency". Youth who walked and also used wheeled mobility spoke of "making choices". "Safety" and "efficiency" were important considerations when making choices. Some participants had mobility "preferences" at home that may not be safe, practical, or socially appropriate at school or in the community. Youth spoke of constantly "adapting to situations" that often reflected a lack of control over the environment. Youth indicated the need for "constantly planning ahead" to go places and do things. Most participants were dependent on others for transportation and expressed "dissatisfaction with public transportation". Safe and efficient mobility to enable participation in daily activities appears to be the primary concern of youth with cerebral palsy. (Contains 1 figure and 4 tables.)

The Gross Motor Function Classification System (GMFCS) for cerebral palsy has been widely used internationally for clinical, research, and administrative purposes. This paper recounts the ideas and work behind the creation of the GMFCS, reports on the lessons learned, and identifies some philosophical challenges inherent in trying to develop an ordered, valid, and consistent system to describe function in children and adolescents with developmental differences. It is hoped that these ideas will be useful to others who choose to expand the field with additional systems in other areas of childhood neurodisability.

Rehabilitation increasingly addresses the International Classification of Functioning, Disability and Health's (ICF) concepts of activity and participation, but little is known about associations between changes in body functions and structures, activity, and participation. We conducted a before-and-after study of 35 ambulatory children with spastic diplegia or hemiplegic cerebral palsy, mean age 5 years 6 months (SD 2y 2mo). Children were in Gross Motor Function Classification System (GMFCS) Levels I (n=11), II (n=12), or III (n=12). We assessed body functions and structures, activity, and participation at baseline and at 2 months and 6 months post-botulinum toxin type A (BoNT-A) injection. Repeated-measures analysis of variance evaluated change, and linear regression assessed relationships. Baseline score relationships were moderate to strong but, despite similar directions of change at 2 months, change score relationships between measures of body functions and structures (spasticity and timed walk), activity (Gross Motor Function Measure and Pediatric Evaluation of Disability Inventory), and participation (Pediatric Outcomes Data Collection Instrument) at 2 months and 6 months were poor to fair (r less than 0.40). Predictor combinations accounted for less than 69% of variation in activity and participation change scores. Predictors often pertained to baseline score, GMFCS level, or age. Relationships between changes at different ICF levels are complex, and activity and participation gains post-BoNT-A are likely to be influenced by the child and environment factors.

Functional impairments can limit a child's ability to participate in the experiences of childhood. This "deprivation" can, in turn, have a negative effect on such children's development, academic performance, and quality of life, as well as on the lives of their caregivers and families. Many adults use assistive devices to overcome functional impairments and enable them to participate in daily activities; however, such devices may be underutilized by children. Each of the 54 studies reviewed in this report identified one or more functional impairments towards which an assistive device was targeted: accessing a computer (n=3 [studies]), activity assistance (n=2), behaviour changes (n=3), communication (n=30), independent feeding (n=1), living skills (n=1), mobility (n=9), modifying the environment (n=1), nutrition (n=4), and postural stability (n=2). The aim of this review was to determine the impact of assistive devices on the components of functioning defined by the World Health Organization's International Classification of Functioning, Disability and Health. The impact of these devices was found to be overwhelmingly positive. Study outcomes reported were mainly child-focused and could be classified as influencing activity, participation, and personal contextual factors, with relatively little attention paid to caregiver-focused outcomes. Few studies provided either qualitative evidence or experimentally-based quantitative research evidence using controls.

This study assessed quality of life (QOL) and health-related quality of life (HRQOL) of 203 adolescents with cerebral palsy (111 males, 92 females; mean age 16y [SD 1y 9mo]). Participants were classified using the Gross Motor Function Classification System (GMFCS), as Level I (n=60), Level II (n=33), Level III (n=28), Level IV (n=50), or Level V (n=32). QOL was assessed by self (66.5%) or by proxy (33.5%) with the Quality of Life Instrument for People With Developmental Disabilities, which asks about the importance and satisfaction associated with the QOL domains of Being, Belonging, and Becoming; HRQOL was captured through proxy reports with the Health Utilities Index, Mark 3 (HUI3), which characterizes health in terms of eight attributes, each having five or six ordered levels of function. GMFCS level was not a source of variation for QOL domain scores but was significantly associated with the eight HRQOL attributes and overall HUI3 utility scores (p less than 0.05). Some QOL domain scores varied significantly by type of respondent (self vs proxy; p less than 0.05). Overall HUI3 utility values were significantly but weakly correlated with QOL Instrument scores for Being (r=0.37), Belonging (r=0.17), Becoming (r=0.20), and Overall QOL (r=0.28), and thus explain up to 14% of the variance (r[superscript 2]). These findings suggest that although QOL and HRQOL are somewhat related conceptually, they are different constructs and need to be considered as separate dimensions of the lives of people with functional limitations.

The article discusses the evolving field of child-onset disability, emphasizing a shift towards celebrating the strengths and functioning of children and young individuals rather than focusing solely on fixing disabilities. It highlights the importance of informing community-based individuals and systems, such as educators and policymakers, about these new approaches to better support children and families. The text also mentions successful collaborations, like the adoption of new ideas by the Province of Ontario's Ministry of Children, Community and Social Services, showcasing the positive impact of sharing knowledge and working together for the benefit of all involved. [Extracted from the article]

Importance: The field of childhood disability has undergone a sea‐change in the past two decades. Remarkably, 70 years ago, the ideas now taking root were expressed with poignant clarity by Ireland's Christy Brown, providing lessons that were there to be learned, illustrating why 'My Left Foot' remains a singular contribution to the literature about child development and disability. Objective of this essay: The World Health Organization's 2001 reconsideration of 'disability' (the International Classification of Functioning, Disability and Health or ICF) has spawned considerable uptake and adaptation of contemporary concepts, notably with the 'F‐Words for Childhood Disability' (now the 'F‐words for Child Development'). Published in 1954, Christy Brown's ground‐breaking poetic autobiography 'My Left Foot' resonates today with messages that bring the ICF to life vividly and memorably. Review The author, a developmental paediatrician, has refracted the themes of 'My Left Foot' through an ICF lens to illustrate that concepts now considered modern have long been in plain sight, but sadly ignored. Christy Brown's first‐person narrative animates ideas and messages for all who work in the field of childhood disability. Findings This essay is a personal reflection that draws together both contemporary 21st century concepts and ideas from the time that Christy Brown was a young author reporting his perspectives and perceptions on living with 'disability'. Conclusions and Relevance: The lessons Christy Brown generously shared 70 years ago should be heeded today. In the context of modern thinking and action regarding 'childhood disability', we need an approach to all we do that sees and respects children with 'disabilities' as whole people, that situates them in the context of family and community, that identifies and promotes their strengths and aspirations within both the health professional community and the community at large and enables them to 'become' and to 'belong'. [ABSTRACT FROM AUTHOR]