A tool kit for measuring functioning in children with neurodisability: calibrating activities

A critical need for children with disabilities is to be as independent as possible in daily activities. A challenge for health and community professionals is to describe children’s performance in self-care, mobility, social cognition, and judgment over time. Advances in the statistical analyses of a broad spectrum of items from valid questionnaires allows for the possibility of profiling the impact of a child’s disability in body structure or physiology. A limitation to this approach has been the difficulty of having several different questions over many daily tasks for the various age groups. It is in this context that the study by Haley et al. should be examined. What was done? Building on their experiences with the Pediatric Evaluation of Disability Inventory (PEDI), an item bank of 76 self-care (eat, groom, chores, operating electronic devices), 105 mobility (roll, sit, walk, run, carry, transfer, negotiate stairs, terrains, public transportation), 64 social ⁄ cognition (communication, peer interaction, play, attention, problemsolving), and 53 responsibility (organizing and planning, taking care of daily needs, health management, sleeping safely) tasks were analyzed. Computer-generated algorithms using item response theory were able to generate a core number of questions to describe a child’s current strengths and challenges in these domains of activities. Who was studied? A representative sample of 2205 English-speaking parents of children without developmental delay or special health care needs were recruited through an Internet survey organization (YouGovPolimetrix). The cohort was representative of sex, race, and socioeconomic status of children residing in the United States, and included 100 children at each age level from the first year of life through age 21. In addition, 617 children with a physical, cognitive, or behavioral disability from the same survey network and 86 children with neurodevelopmental disabilities followed in clinical programs for children with special health care needs were recruited. The children with disability included children with cerebral palsy, traumatic brain injury, and neurosensory impairments as well as those with a wide variety of communication, learning, attention, developmental, and behavioral challenges. What was found? The new computer-adaptive PEDI tests (PEDI-CAT) allows children and young people between the first year of life and 21 years to be surveyed with a focused number of items to describe their performance along a continuum in daily activities of functioning. The test was taken by the parents of children with or without a disability and involved 15 items, and 10 to 15 minutes of interview time. Assessments could take place over the Internet through existing opt-in survey panels or through computer tablets in clinical sites. The accuracy of both the 10-item and 15-item PEDI-CAT was proven by the high correlation coefficients using scores from real world data. Accuracy was highest for performance in the midrange. This study demonstrates the value of the computer-adaptive test as a tool to develop appropriate items across a spectrum of individual functional performance in mobility, self-care, social cognition, and judgment tasks. What are the implications? The advantage of using a large item bank that has previously been validated in children with developmental and acquired disability is that item response theory can be applied, so that children’s ability in functional skills already mastered can lead to a more focused interview on skills that are the immediate next steps in the child’s repertoire. For example, if a child walks indoors to criterion specifications, one does not need to ask if they roll or crawl. Similarly, if one communicates basic needs in short sentences, one does not have to query if they are able to speak in single