Measuring functional skills in preschool children at risk for neurodevelopmental disabilities

Approximately 400,000 preschool children have a major neurodevelopmental disorder impacting on mobility, cognitive-adaptive, or communicative skills. As many as 1 in 3 children live at psychosocial disadvantage because of poverty, parental mental illness or substance misuse, or low parental educational (i.e. less than high school). In the past decade over 500,000 preschool children have survived being born with very low birth weight (1001-1500 g) or extremely low birth weight status (< or =1000 g). Given the scope of these risks and the importance of optimizing outcomes for vulnerable children, this review will highlight advances in functional assessment using adaptive and multiattribute health-related quality of life measures. A framework based on the International Classification of Functioning, (ICF) World Health Organization and the Dynamic Kaleidoscope Model of the Institute of Medicine (IOM) will be described and illustrated with examples of children receiving new biomedical technologies. Assessment scales were chosen for review if they measured adaptive skills or multiattribute health status and had been used in child disability populations. Instruments reviewed include the Infant and Toddler Quality of Life Questionnaire (ITQOL), The Netherlands Office of Prevention Assessment of Preschool Quality of Life (TAPQOL), the Health Status Classification System-PreSchool (HSCS-PS), the Pediatric Evaluation of Disability Inventory (PEDI), the Vineland Adaptive Behavior Scale (VABS), the Warner Inventory of Developmental and Emerging Adaptive and Functional Skills (Warner IDEA-FS), the Scales of Independent Behavior Revised (SIB-R) Early Development Form, the Pediatric Functional Independence Measure (WeeFIM), and the Pediatric Quality of Life Inventory Version 4 (PedsQL 4.0). By measuring functional and adaptive skills and health-related quality of life, we can help devise intervention strategies that optimize developmental independence, family supports, and community participation among children who are at risk for neurodevelopmental disabilities or who have evolving established neurodevelopmental disabilities.