Functionality, school participation and quality of life of schoolchildren with cerebral palsy

Abstract Introduction: The quality of life (QoL) of schoolchildren with cerebral palsy (CP) should be evaluated considering the functional variability of the child with CP with an extended view on functionality in the school context and the determinants of QoL. Objective: to evaluate the school participation and the QoL of schoolchildren with CP in Recife's municipal public network, as well as to analyze the influence of GMFCS levels and motor performance on these variables in the study population. Method: This is an exploratory observational study whose evaluation model was structured based on the International Classification of Functioning, Disability and Health (CIF). Children with CP were classified in the Gross Motor Function Classification System (GMFCS) and evaluated according to Gross Motor Function Measure-88 (GMFM-88). The School Function Assessment (SFA) and the Quality of Life Questionnaire for Cerebral Palsy (CPQOL-Caregiver) were answered by teachers and mothers, respectively. Results: In the study population, the higher the GMFCS level, the lower the participation and the lower the independence in school activities, aspects that add to the QoL construct, mainly with less functionality, less emotional well-being and self-esteem, and lower family health. Conclusion: GMFCS levels and motor performance of schoolchildren with CP can affect school participation and QoL, and it is important to consider each child's individual and contextual factors. These results can help the development of functional, care, inclusion and pedagogical strategies for students with CP.

引言：脑瘫（CP）学龄儿童的生活质量（QoL）评估需结合脑瘫患儿的功能变异性，同时需从更广视角关注其学校情境中的功能表现与生活质量的影响因素。
目的：评估巴西累西腓市公立学校体系内脑瘫学龄儿童的学校参与度与生活质量，并分析研究人群中粗大运动功能分级系统（GMFCS）等级与运动功能对上述变量的影响。
方法：本研究为探索性观察性研究，评估模型基于《国际功能、残疾和健康分类》（International Classification of Functioning, Disability and Health, ICF）构建。脑瘫学龄儿童依据粗大运动功能分级系统（GMFCS）进行分级，并采用粗大运动功能评估量表-88（Gross Motor Function Measure-88, GMFM-88）进行评估。学校功能评估量表（School Function Assessment, SFA）与脑瘫患儿生活质量问卷（Quality of Life Questionnaire for Cerebral Palsy, CPQOL-Caregiver）分别由任课教师与患儿母亲填写。
结果：本研究人群中，GMFCS等级越高，儿童的学校参与度越低，学校活动独立性越差；上述特征与生活质量维度显著相关，具体表现为功能水平更低、情绪幸福感与自尊感不足，以及家庭健康状况更差。
结论：脑瘫学龄儿童的GMFCS等级与运动功能可显著影响其学校参与度与生活质量，临床与教育实践中需充分考量每个儿童的个体特征与情境因素。本研究结果可为脑瘫学生的功能康复、照护支持、融合教育与教学策略开发提供借鉴依据。