Developing a Culturally Sensitive ICF-Based Tool to Describe Functioning of Children with Autism Spectrum Disorder: TEA-CIFunciona Version 1.0 Pilot Study.

Celina Lejarraga,Paula Pedernera Bradichansky,Anabella Escalante,Verónica Schiariti,Maria Gabriela Urinovsky,Silvana B Napoli,María Belén Micheletti,Estela Rodriguez,María Paula Vitale,Pablo J Cafiero

doi:10.3390/ijerph18073720

Celina Lejarraga, Paula Pedernera Bradichansky + Show 8 more

Open Access

https://doi.org/10.3390/ijerph18073720

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Abstract

Background: Autism spectrum disorder (ASD) affects the daily functioning of children and their families; however, in Argentina, there are no standardized tools to guide the description, evaluation, and follow-up of functioning and disability of children with ASD. To fill this gap, the overarching purpose of this study was to create a novel tool guided by the International Classification of Functioning, Disability, and Health (ICF) Core Sets for ASD for clinical practice. Methods: A multistep methodology was used to identify the most relevant ICF categories for an Argentinian clinical setting. The content of this ICF-based shortlist was piloted and revised according to the results. Subsequently, a toolbox of measures was proposed to operationalize each ICF category. Finally, profiles of the functioning of 100 children with ASD were created. Results: An ICF-based tool called TEA-CIFunciona was created, consisting of 32 ICF categories (10 body functions, 15 activities and participation, 7 environmental factors categories). The application of TEA-CIFunciona incorporated a family-centered approach in ASD evaluations and helped identify functional needs. Conclusions: TEA-CIFunciona is the first ICF-based instrument that guides the description of functioning of children with ASD in Argentina. TEA-CIFunciona standardizes collaborative assessments in pediatric ASD populations in Latin American contexts.

Highlights

Autism spectrum disorder (ASD) is a developmental disorder with a variable phenotypic expression characterized by communication and socialization difficulties and repetitive and stereotyped patterns of behavior [1,2]
This study describes the creation of a novel ICF-based instrument called TEACIFunciona version 1.0. This is the first study conducted in Latin America that describes functioning in children with ASD
This study describes the first attempt to operationalize the content of the ICF Core Sets for ASD in a pediatric clinical setting, as such; the multi-step methodology applied for developing TEA-CIFunciona may encourage the international community to replicate our effort in different cultural settings around the globe, and identify the most relevant items or tools to assess the content of the ICF Core Sets for ASD in their countries

Summary

Introduction

Autism spectrum disorder (ASD) is a developmental disorder with a variable phenotypic expression characterized by communication and socialization difficulties and repetitive and stereotyped patterns of behavior [1,2]. ASD is generally diagnosed in early childhood and is considered to be secondary to an alteration in early brain development and neural reorganization [3]. The core symptoms of ASD have an early onset in childhood and tend to persist throughout the lifespan. The global estimated prevalence of ASD is 1–2% [4]. In Argentina there is a lack of data on the overall prevalence of ASD; isolated studies have found similar figures to the prevalence estimates for the Americas by the World Health Organization (WHO) 0.7% [5,6]. Diagnosis of ASD guides individualized early intervention. ASD diagnostic assessment warrants a detailed evaluation of the behavioral features described in manuals of diagnosis and classification, including the Diagnostic and Statistical Manual of Mental

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