ABSTRACT

Recent technological advances and innovative therapies have resulted in a dramatic improvement in the survival rates of children with cancer, cystic fibrosis, and very low birthweight infants. Although there has been some corresponding improvement in morbidity among very low birth-weight Infants, it has not kept pace with improvements in survival (Hack, Friedman, & Fanaroff, 1996). Thus, questions about the long-term outlook of these children continue to be of paramount concern for both parents and health-care providers. Furthermore, the importance of including long-term outcome measures in evaluating newer medical treatments is now increasingly recognized. The measurement of quality of life (QOL) adds an important and meaningful dimension to the standard biomedical reports of neurological and cognitive functioning included in most outcome studies of this population.