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Who gets missed: coverage in a provincial newborn screening program for metabolic disease
D W Spady1, L D Saunders, F Bamforth
1Departments of Pediatrics, Faculty of Medicine, University of Alberta, Edmonton, Alberta, Canada.
Objective:
To determine coverage of the newborn screening program (NSP) for metabolic disease in Alberta, Canada, and to determine reasons for not being screened.
Study Design:
Coverage was estimated by deterministic matching of live birth registration data with newborn screening data for the year 1992. Demographic characteristics of not-matched infants were compared with good-match infants using logistic regression.
Results:
For 42 392 live births, there were 41 553 screening records, of which 40 593 infants were very good matches to NSP records. Another 960 were possible matches. A total of 839 infants were not matched at all, and coverage was estimated at 98.0%. Determinants of infant not-matched status were death in week 1 (adjusted odds ratio [OR]: 383); birth weight of <1500 g (adjusted OR: 18.9) or between 1500 and 2500 g (adjusted OR: 3.2); having a mother who was single (adjusted OR: 2.7) or formerly married (adjusted OR: 12.9); or being born out of hospital (OR: 19. 2). The calculated 98% coverage is close to an estimate of 98.3% made by the NSP comparing total births with initial screenings.
Conclusion:
The matched data give insight as to who was missed and point to the need for closer attention for infants at greater risk of not being screened for metabolic disease.