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International classification of functioning, disability and health framework (ICF) based adaptive functioning outcomes of children with organic acidemias from a middle-income country
Brain and Development ( IF 1.7 ) Pub Date : 2021-03-01 , DOI: 10.1016/j.braindev.2020.11.011
Ezgi Özalp Akin 1 , Bahar Bingoler Pekcici 1 , Fatma Tuba Eminoglu 2
Affiliation  

OBJECTIVE The World Health Organization International Classification of Functioning, Disability and Health Framework (ICF) states that a child's health conditions, functions, activities, participation in life and contextual factors shape disability. Research on the development of children with organic acidemias (OA) mostly focused on cognitive and medical outcomes. This study aimed to examine adaptive functioning of children with OAs based on ICF. METHODS In this cross-sectional study, children with propionic academia, methylmalonic acidemia and maple syrup urine disease receiving care at Ankara University School of Medicine, Department of Pediatrics, Pediatric Metabolism Division were recruited. Comprehensive developmental assessments included ICF-based methods. Adaptive functioning was measured with Vineland Adaptive Behavior Scales-Second Edition. RESULTS The sample comprised 22 children with a median age of 47.5 months (IQR: 35-73.5). Most mothers (64%) had less than 5 years of education, half had depression. Two children (9%) were attending to school, 14 (64%) were not regularly playing with friends. Fourteen children (64%) had significant communication delays, 12 (55%) had significant problems in daily living skills, and 12 (55%) in social skills. Mean adaptive behavior composite score was 65.5 ± 16.8 (low), children with feeding disorders had significantly more low adaptive behavior composite scores than children with no feeding disorder diagnosis (p = 0.001). CONCLUSIONS Our results imply that children with OAs from Turkey, a middle-income country had major difficulties in functioning, activities, participation and contextual factors. Feeding problems appeared as a risk factor for lower adaptive functioning. ICF-based assessments and interventions are urgently needed in the management of children with OAs.

中文翻译:

基于国际功能、残疾和健康框架 (ICF) 分类的中等收入国家有机酸血症儿童的适应功能结果

目标 世界卫生组织国际功能、残疾和健康分类框架 (ICF) 指出,儿童的健康状况、功能、活动、对生活的参与和环境因素会影响残疾。对有机酸血症 (OA) 儿童发育的研究主要集中在认知和医疗结果上。本研究旨在检查基于 ICF 的 OA 儿童的适应性功能。方法 在这项横断面研究中,招募了在安卡拉大学医学院儿科小儿代谢部接受治疗的丙酸血症、甲基丙二酸血症和枫糖浆尿病儿童。综合发展评估包括基于 ICF 的方法。使用 Vineland Adaptive Behavior Scales-Second Edition 测量适应性功能。结果 样本包括 22 名中位年龄为 47.5 个月(IQR:35-73.5)的儿童。大多数母亲 (64%) 受教育时间不到 5 年,一半患有抑郁症。两个孩子 (9%) 在上学,14 个 (64%) 不经常和朋友一起玩。14 名儿童 (64%) 存在明显的沟通延迟,12 名 (55%) 的日常生活技能存在严重问题,12 名 (55%) 的社交技能存在严重问题。平均适应行为综合得分为 65.5 ± 16.8(低),喂养障碍儿童的低适应行为综合得分明显低于未诊断出喂养障碍的儿童(p = 0.001)。结论 我们的结果表明,来自中等收入国家土耳其的 OA 儿童在功能、活动、参与和背景因素。喂养问题似乎是降低适应性功能的风险因素。在 OA 儿童的管理中迫切需要基于 ICF 的评估和干预。
更新日期:2021-03-01
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