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International classification of functioning, disability and health framework (ICF) based adaptive functioning
Ezgi Özalp Akin1, Bahar Bingoler Pekcici1, Fatma Tuba Eminoglu2
1Ankara University School of Medicine, Department of Pediatrics, Developmental-Behavioral Pediatrics Division, Turkey.
Insights
Children with organic acidemias (OA) experience significant challenges in adaptive functioning, including communication and social skills. Feeding problems are a key risk factor for lower adaptive outcomes in these children.
Area of Science:
- Pediatric Metabolism
- Developmental Pediatrics
- Disability Studies
Background:
- Organic acidemias (OAs) are a group of inherited metabolic disorders.
- Previous research on OAs primarily focused on cognitive and medical outcomes.
- The International Classification of Functioning, Disability and Health (ICF) framework provides a comprehensive model for understanding disability.
Purpose of the Study:
- To examine the adaptive functioning of children with OAs using an ICF-based approach.
- To identify factors influencing adaptive functioning in children with OAs.
Main Methods:
- A cross-sectional study involving 22 children diagnosed with propionic academia, methylmalonic acidemia, or maple syrup urine disease.
- Utilized ICF-based developmental assessments.
- Measured adaptive functioning using the Vineland Adaptive Behavior Scales-Second Edition.
Main Results:
- Children with OAs exhibited significant delays in communication (64%), daily living skills (55%), and social skills (55%).
- The mean adaptive behavior composite score was low (65.5 ± 16.8).
- Feeding disorders were significantly associated with lower adaptive behavior composite scores (p=0.001).
Conclusions:
- Children with OAs in Turkey face substantial challenges in functioning, activities, and participation.
- Feeding problems represent a significant risk factor for impaired adaptive functioning in this population.
- ICF-based assessments and interventions are crucial for managing children with OAs.
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.
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