Paula S C Chagas, Alana G Lemos, Kênnea M A Ayupe, Aline M Toledo, Ana Cristina R Camargos, Egmar Longo, Rosane L S Morais, Hércules R Leite, Robert J Palisano, Peter Rosenbaum, Angélica C S F Romeros, Amanda L O Lima, Déborah E Fontes, Elton D D Magalhães, Jaíza M M Silva, Maria Luíza F Alves, Rayane F L Monteiro, Ana Carolina de Campos, Rafaela S Moreira
{"title":"脑瘫儿童和青少年的功能概况及相关障碍--巴西 PartiCipa 初步结果。","authors":"Paula S C Chagas, Alana G Lemos, Kênnea M A Ayupe, Aline M Toledo, Ana Cristina R Camargos, Egmar Longo, Rosane L S Morais, Hércules R Leite, Robert J Palisano, Peter Rosenbaum, Angélica C S F Romeros, Amanda L O Lima, Déborah E Fontes, Elton D D Magalhães, Jaíza M M Silva, Maria Luíza F Alves, Rayane F L Monteiro, Ana Carolina de Campos, Rafaela S Moreira","doi":"10.1186/s12887-024-05210-2","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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. 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引用次数: 0
摘要
背景:有关巴西等中低收入国家(LMIC)脑瘫儿童和青少年的功能和相关障碍的信息十分有限。本研究旨在描述巴西脑瘫儿童和青少年的特征、功能和障碍:横断面初步研究是 PartiCipa 巴西多中心队列研究的一部分。研究对象为巴西 4 个月至 15 岁患有脊髓灰质炎的儿童和青少年的家庭。他们回答了一项在线调查,调查内容包括孩子的健康状况、障碍、环境因素以及根据粗大运动功能分类系统(GMFCS)和徒手能力分类系统(MACS)得出的功能情况。数据按年龄段以频率、百分比、平均值和标准差的形式进行描述:在初步分析的 404 名参与者(6.5±3.6 岁)中,54.7% 为男性,90.4% 年龄在 12 岁以下,77.7% 患有双侧 CP,49% 属于 GMFCS IV 级和 V 级,50.7% 属于 MACS II 级和 V 级。关于障碍和功能限制:每 2 人中有 1 人不会说话;每 2 人中有 1 人患有癫痫;每 5 人中有 2 人报告有疼痛感;每 4 人中有 1 人有视力障碍;每 5 人中有 3 人不会自己进食;每 20 人中有 1 人有听力障碍;每 4 人中有 1 人没有上学:巴西的第一项初步研究表明,巴西儿童中,MACS II 级和 V 级以及 GMFCS IV 级和 V 级的儿童比例很高,几乎占了该群体的一半,这表明巴西儿童/青少年比高收入国家的儿童/青少年有更多的缺陷和限制。这项研究初步加深了对巴西各地区患有脊柱侧弯症的儿童和青少年在活动方面的主要障碍和限制的了解。
Functioning profile and related impairments of children and adolescents with cerebral palsy - PartiCipa Brazil preliminary results.
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.
期刊介绍:
BMC Pediatrics is an open access journal publishing peer-reviewed research articles in all aspects of health care in neonates, children and adolescents, as well as related molecular genetics, pathophysiology, and epidemiology.