Study protocol: functioning curves and trajectories for children and adolescents with cerebral palsy in Brazil - PartiCipa Brazil.

BACKGROUND: Gross motor development curves for children with Cerebral Palsy (CP), grouped by Gross Motor Function Classification System (GMFCS) levels, help health care professionals and parents to understand children's motor function prognosis. Although these curves are widely used in Brazil to guide clinical decision-making, they were developed with Canadian children with CP. Little is known about how these patterns evolve in children and adolescents with CP in low-income countries like Brazil. The PARTICIPA BRAZIL aims to: (i) to identify and draw a profile of functioning and disability of Brazilian children and adolescents with CP by classifying them, for descriptive purposes, with all five valid and reliable functional classifications systems (gross motor function, manual ability, communication function, visual and eating and drinking abilities); (ii) to create longitudinal trajectories capturing the mobility capacity of Brazilian children and adolescents with CP for each level of the GMFCS; (iii) to document longitudinal trajectories in the performance of activities and participation of Brazilian children and adolescents with CP across two functional classification systems: GMFCS and MACS (Manual Abilities Classification System); (iv) to document longitudinal trajectories of neuromusculoskeletal and movement-related functions and exercise tolerance functions of Brazilian children and adolescents with CP for each level of the GMFCS; and (v) to explore interrelationships among all ICF framework components and the five functional classification systems in Brazilian children and adolescents with CP. METHODS: We propose a multi-center, longitudinal, prospective cohort study with 750 Brazilian children and adolescents with CP from across the country. Participants will be classified according to five functional classification systems. Contextual factors, activity and participation, and body functions will be evaluated longitudinally and prospectively for four years. Nonlinear mixed-effects models for each of the five GMFCS and MACS levels will be created using test scores over time to create prognosis curves. To explore the interrelationships among ICF components, a multiple linear regression will be performed. DISCUSSION: The findings from this study will describe the level and nature of activities and levels of participation of children and youth with CP in Brazil. This will support evidence-based public policies to improve care to this population from childhood to adulthood, based on their prognosis.

Caracterization of adults with cerebral palsy.

BACKGROUND: cerebral Palsy (CP) is a group of permanent disorders of the development of movement and posture that cause functional limitation and are attributed to non-progressive disorders which occur in the fetal or infant brain. In recent years, with the increase in life expectancy of individuals with CP, several studies have described the impact of musculoskeletal disabilities and functional limitations over the life cycle. OBJECTIVE: to characterize adults with CP through sociodemographic information, classifications, general health, associated conditions, physical complications and locomotion. METHODS: twenty-two adults with CP recruited from local rehabilitation centers in an inner town of Brazil participated in this study. A questionnaire was used to collect data on sociodemographic characteristics, comorbities, and physical complications. A brief physical therapy evaluation was carried out, and the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS) were applied. Data were analyzed through descriptive statistics. RESULTS: the mean age was 28.7 (SD 10.6) years, 86.4% of participants lived with parents, and 4.5% were employed. Most of the sample consisted of spastic quadriplegic subjects, corresponding to levels IV and V of the GMFCS and MACS. Different comorbidities and important physical complications such as scoliosis and muscle contractures were present. More than half of the participants were unable to walk. CONCLUSIONS: Most participants demonstrated important restrictions in social participation and lower educational level. Adults with CP can be affected by several physical complications and progressive limitations in gait.

Caracterização de adultos com paralisia cerebral / Caracterization of adults with cerebral palsy

CONTEXTUALIZAÇÃO: Paralisia Cerebral (PC) é um grupo de perturbações permanentes no desenvolvimento de movimentos e posturas que causam limitação nas atividades funcionais e que são atribuídas a distúrbios não-progressivos que ocorrem no cérebro fetal ou infantil. Nos últimos anos, com o aumento na expectativa de vida dos indivíduos com PC, vários estudos têm descrito a instalação de deficiências musculoesqueléticas e limitações funcionais ao longo do ciclo vital. OBJETIVO: Caracterizar adultos com PC por meio de informações sociodemográficas, classificações, saúde geral e condições associadas, complicações físicas e locomoção. MÉTODOS: Participaram deste estudo 22 adultos com PC residentes em uma cidade no interior do Brasil, recrutados nos centros de reabilitação locais. Aplicou-se um questionário para caracterização sociodemográfica, de comorbidades e complicações físicas. Além disso, realizou-se breve avaliação fisioterapêutica e aplicaram-se as classificações padronizadas, Sistema de Classificação da Função Motora Grossa (GMFCS) e Sistema de Classificação das Habilidades Manuais (MACS). Os dados foram analisados de forma descritiva. RESULTADOS: A média de idade foi de 28,7 anos, 86,4 por cento participantes moravam com os pais, 4,5 por cento possuíam emprego. A maior parte da amostra era composta por quadriplégicos espásticos, níveis IV e V do GMFCS e do MACS. Houve presença de diferentes comorbidades e importantes complicações físicas, como escoliose e contraturas musculares. Mais da metade dos participantes não deambula. Conclusões: A maioria dos participantes demonstrou ter importante restrição na participação social, além de escolaridade baixa. Adultos com PC estão sujeitos ainda a instalação de várias complicações físicas e limitações progressivas na marcha.

BACKGROUND: Cerebral Palsy (CP) is a group of permanent disorders of the development of movement and posture that cause functional limitation and are attributed to non-progressive disorders which occur in the fetal or infant brain. In recent years, with the increase in life expectancy of individuals with CP, several studies have described the impact of musculoskeletal disabilities and functional limitations over the life cycle. OBJECTIVE: To characterize adults with CP through sociodemographic information, classifications, general health, associated conditions, physical complications and locomotion. METHODS: Twenty-two adults with CP recruited from local rehabilitation centers in an inner town of Brazil participated in this study. A questionnaire was used to collect data on sociodemographic characteristics, comorbities, and physical complications. A brief physical therapy evaluation was carried out, and the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS) were applied. Data were analyzed through descriptive statistics. RESULTS: The mean age was 28.7 (SD 10.6) years, 86.4 percent of participants lived with parents, and 4.5 percent were employed. Most of the sample consisted of spastic quadriplegic subjects, corresponding to levels IV and V of the GMFCS and MACS. Different comorbidities and important physical complications such as scoliosis and muscle contractures were present. More than half of the participants were unable to walk. CONCLUSIONS: Most participants demonstrated important restrictions in social participation and lower educational level. Adults with CP can be affected by several physical complications and progressive limitations in gait.