Who gets lost: follow-up of suspect results in a newborn screening program.

Abstract

Objective. To determine reasons for and adequacy of follow-up testing of suspect results of metabolic screening in infants born in Alberta in 1992. Study Design. Of 42 392 live births, 41 553 infants were deterministically matched using birth registry data. Infants requiring repeat analyses were determined from notes made on the screening report. Characteristics of infants needing repeat screening, and obtaining a repeat screen results, were determined by logistic regression using variables from the birth registry and the screening record. Results. A total of 1375 infants required repeat screening. Infants with unsatisfactory samples were more likely to be born in a smaller community, of low birth weight, and to have the sample obtained after 7 days of age. Infants with biologically suspect results were more likely to be of low birth weight, to die in week 1 of life, and to be born in a large hospital. Repeat analyses were found for 663 infants. Boys, infants from smaller communities, and low birth weight infants were more likely to have the required repeat screening. Infants of single mothers were less likely to undergo repeat screening. Conclusions. The results of this study demonstrate the need for a clear, time-oriented protocol of follow-up of newborn metabolic screening results.