Developmentally Disabled Infants Can Be Hard to Trace

Abstract

The purpose of this study was to determine how well the existing medical care system in a large geographic region communicates about and keeps track of the developmental problems of infants receiving tertiary inpatient care. Two hundred thirty-seven infants hospitalized in the first months of life were tracked, using a postal questionnaire at a mean age of 20 months. A discharge summary was present in 98 percent of charts, and a follow-up physician was identified in 95%. Questionnaires were returned by 116 physicians about 182 infants (77%). Seventy-one physicians had received a discharge summary. Current developmental information was obtained for 111 infants: 44 normal, 52 with known disabilities, and 15 with developmental delays. One hundred twenty-six infants could not be located at the time of the study. We conclude that many infants likely to have major disabilities are hard to track using simple retrospective techniques.