Abstract
Clinical measures in health and rehabilitation settings are often used to examine child functioning to better support the diverse needs of children with neurodevelopmental disorders (NDD) and their families. The WHO's International Classification of Functioning, Disability, and Health (ICF) framework reflects a focus of health beyond biomedical deficits, using the concept of functioning to create opportunities for measurement development involving this construct. In the measures developed in the field of childhood NDD, it is unclear whether and how these tools measure and incorporate the ICF framework and its domains within health care contexts. Understanding how these measures utilize the ICF will enable researchers and clinicians to operationalize function-focused concepts in studies and clinical practice more effectively. This narrative review aims to identify and describe function-focused measures that are based on the ICF for children with NDD, as described in the peer-reviewed literature. This review used a systematic search strategy with multiple health-focused databases (Medline, PsycInfo, EMBASE, EMCARE), and identified 14 clinical measures that provide direct support for children (aged 0-21) with NDD in pediatric health (and other) settings. Results described the measures that were primarily developed for three main diagnostic populations [cerebral palsy, autism spectrum disorder, and communication disorders]; had varying contextual use (clinical-only or multiple settings); and for which authors had conducted psychometric tests in the measure's initial development studies, with the most common being content validity, interrater reliability, test-retest reliability. Participation (79%, n = 11) & Activities (71%, n = 10) were the most common ICF domains captured by the set of measurement tools. Overall (71%, n = 10) of the identified measures utilized multiple ICF domains, indicating that the “dynamic nature” of the interactions of the ICF domains was generally evident, and that this result differentiated from “linking rules,” commonly used in research and clinical practice. The implications of these findings suggest that clinical measures can be an effective application of the ICF's defined concepts of functioning for children with NDD.
Highlights
Neurodevelopmental disorders (NDD), as defined by the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), refer to a group of conditions that present during a child’s early developmental period and are characterized by developmental deficits that may create challenges in the child’s personal, social, academic, or occupational functioning (1)
The first stage was to identify original research texts that (a) focused on children (18 and younger) diagnosed with NDD defined by DSM-5, and (b) referenced the ICF framework
The aim of this review was to provide an overview of the current ICF-based measures developed for children with NDD, in which we focused on using the development studies as the main sources for this work
Summary
Neurodevelopmental disorders (NDD), as defined by the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), refer to a group of conditions that present during a child’s early developmental period and are characterized by developmental deficits that may create challenges in the child’s personal, social, academic, or occupational functioning (1). Biomedical models and thinking have greatly influenced clinical practice, including the field of childhood disability (8, 9) This traditional way of thinking focused on the attributes of a child’s deficits and limitations, for diagnostic purposes and to treat aspects of the child’s “disability” (10, 11). In 2001, the International Classification of Functioning, Disability, and Health (ICF) – a contemporary conceptual framework – challenged these practices and highlighted the paradigm shift to think beyond the biomedical model to an integrated biopsychosocial model of human functioning and disability (8) This biopsychosocial model emphasizes that individuals with disabilities have needs that extend beyond the medical scope of practice, and are often broad-based in nature within social, educational, and functional settings (12)
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