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Measuring functional skills in preschool children at risk for neurodevelopmental disabilities
1University of Chicago Pritzker School of Medicine, Kennedy Mental Retardation Center, LaRabida Children's Hospital, Chicago, IL 60637, USA. mmsall@peds.bsd.uchicago.edu
Insights
Vulnerable preschoolers with neurodevelopmental disorders or psychosocial disadvantage benefit from advanced functional assessments. These tools measure adaptive skills and quality of life, guiding interventions for better independence and participation.
Area of Science:
- Pediatric Health
- Developmental Pediatrics
- Rehabilitation Medicine
Background:
- Millions of preschool children face neurodevelopmental disorders affecting key skills.
- A significant proportion experience psychosocial disadvantage due to socioeconomic factors.
- Advances in neonatal care have increased survival rates for very low birth weight infants, who are at higher risk.
Purpose of the Study:
- To review advances in functional assessment for vulnerable preschool children.
- To highlight the use of adaptive and multiattribute health-related quality of life measures.
- To provide a framework for understanding and optimizing outcomes for at-risk children.
Main Methods:
- A review of assessment scales measuring adaptive skills or multiattribute health status in child disability populations.
- Utilizing the International Classification of Functioning (ICF) and the Institute of Medicine's (IOM) Dynamic Kaleidoscope Model as a framework.
- Illustrating the application of these assessments with examples of children using new biomedical technologies.
Main Results:
- Identified and reviewed key assessment instruments including ITQOL, TAPQOL, HSCS-PS, PEDI, VABS, Warner IDEA-FS, SIB-R, WeeFIM, and PedsQL 4.0.
- Demonstrated the utility of these measures in evaluating functional and adaptive skills.
- Highlighted the importance of health-related quality of life in assessing outcomes.
Conclusions:
- Functional and adaptive skill assessments are crucial for identifying needs in vulnerable children.
- Health-related quality of life measures provide a comprehensive view of a child's well-being.
- Optimizing interventions based on these assessments can enhance developmental independence, family support, and community participation.
Abstract:
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.
