Outcomes and Opportunities: A Study of Children with Cortical Visual Impairment.

Pediatric View is an evaluation project that began in 1999 and is located at Western Pennsylvania Hospital in Pittsburgh. It is affiliated with the hospital's Department of Pediatrics and Neonatology and was initiated as an adjunct to the neonatal developmental follow-up clinic. The purpose of Pediatric View is to provide developmental and functional vision evaluations to children who have ocular or cortical visual impairments. A team that includes a neonatologist and an individual who has expertise in child development and visual impairment conduct the evaluations. The evaluations are generally two hours in length, and a detailed report that provides specific follow-up intervention strategies is provided for each infant, child, or adolescent. Since 1999, more than 300 individuals with cortical visual impairment (CVI) have been evaluated at Pediatric View. In 2003, systematic data collection was initiated to monitor the progress of infants, children, and adolescents who have CVI. The data collection and analysis are based on two specific research questions: "Are there commonalities in the medical histories of infants, children, and adolescents who have CVI?" and "Is there measurable improvement in the functional vision of children who have CVI?" REVIEW OF THE LITERATURE The medical causes of CVI have been described by Huo, Burden, Hoyt, and Good (1999); Teplin (1995); and Jan and Groenveld (1993). Researchers have also reported on the coexisting ocular conditions of children with CVI (Good et al., 1994: Jan & Wong, 1991; Lowery, Atkinson, & Lambert, 2006). However, there have been no reviews of the birth history, length of medical intensive care, preterm or full-term birth, neonatal seizures or ongoing seizures, and treatment with medications in a diverse cohort of infants, children, and adolescents. It has been recognized that there are improvements in acuity in children with CVI (Good, 2001; Hoyt, 2007; Huo et al., 1999; Jan, Sykanda, & Groenveld, 1990). However, little is known about the functional vision status of individuals who have CVI. According to Topor (2009, p. 1), Vision is functional if a child is able to utilize visual information to plan and carry out a task.... A functional vision assessment measures how well a child uses vision to perform tasks in different places and with different materials throughout the day. The functional vision assessment "paints a picture" of how a child uses vision and what visual skills the child needs to develop further. The CVI Range (Roman-Lantzy, 2007) is a functional vision assessment that is designed for the specific visual and behavioral needs of individuals who have CVI. It has been shown to be a reliable evaluation instrument (Newcomb, 2010). Newcomb found that the CVI Range has a high degree of interrater, test-retest, and internal consistency reliability. These data indicate that scores that are obtained on the CVI Range measure the intended underlying construct: the degree of affect of CVI. The CVI Range is used with infants, children, and adolescents, and can be used with those who have mild, moderate, significant, or no additional disabilities. METHODS, QUESTION 1 The subset of individuals in this study was selected only if a complete data set was available. Of all the records that we reviewed, a cohort of 77 individuals met the criteria. The mandatory information included the following: medical etiologies, maternal pregnancy and perinatal history, an eye examination by an ophthalmologist, visual diagnoses of ocular or cortical visual impairment, the presence and type of seizures, and medications. The cohort included 77 individuals from 17 U.S. states and two countries outside the United States. Although the individuals traveled from all regions of the United States, they are not considered a random sample. All 77 families voluntarily sought the services offered at Pediatric View and scheduled their own appointments. …