Functioning profile and related impairments of children and adolescents with cerebral palsy - PartiCipa Brazil preliminary results
Paula Silva de Carvalho Chagas, Alana G. Lemos, Kênnea Martins Almeida Ayupe, Aline Martins de Toledo, Ana Cristina Resende Camargos, Egmar Longo, Rosane Luzia de Souza Morais, Hércules Ribeiro Leite, Robert J. Palisano, Peter Rosenbaum, Angélica Cristina Sousa Fonseca Romeros, Amanda Larissa Oliveira Lima, Déborah Ebert Fontes, Elton Duarte Dantas Magalhães, Jaíza Marques Medeiros e Silva, Maria Judite Alves, Rayane F L Monteiro, Ana Carolina de Campos, Rafaela Silva Moreira
Abstract
BACKGROUND: Limited information is available about functioning and related impairments of children and adolescents with Cerebral Palsy (CP) in low- and middle-income countries (LMIC) like Brazil. The aim of this study is to describe the characteristics, functioning, and impairments of Brazilian children and adolescents with CP. METHODS: Cross-sectional preliminary study as part of the PartiCipa Brazil multicentered cohort study. Families of children and adolescents with CP from Brazil, 4 months to 15 years, were enrolled. They responded to an online survey with questions about their child's health condition, impairments, contextual factors, and functioning according to the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS). Data were described as frequencies, percentages, means, and standard deviations, according to age bands. RESULTS: Of the 404 participants (6.5±3.6 years) enrolled in this preliminary analysis, 54.7% are male, 90.4% under 12 years of age, 77.7% have bilateral CP, 49% in GMFCS levels IV and V, and 50.7% in MACS levels II and V. Most participants are from Southeast (63.4%) and Centre-west (19.5%) of Brazil. Regarding the impairments and functioning limitations: 1 in 2 did not talk; 1 in 2 has epilepsy; 2 of 5 reports pain, 1 of 4 has visual impairments, 3 out of 5 did not feed themselves, 1 out of 20 has a hearing impairment and 1 of 4 did not go to school. CONCLUSION: This first preliminar Brazilian study shows a high prevalence of children at MACS levels II and V and GMFCS levels IV and V, representing almost half of the group, indicating more impairments and limitations than children/adolescents from high-income countries. This study provides a preliminary deeper understanding of the key impairments and limitations in activities among children and adolescents with CP from various Brazilian regions.