Who gets missed: coverage in a provincial newborn screening program for metabolic disease.
OBJECTIVE
To determine coverage of the newborn screening program (NSP) for metabolic disease in Alberta, Canada, and to determine reasons for not being screened.


METHODS
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.


CONCLUSIONS
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.
Departments of Pediatrics, Faculty of Medicine, University of Alberta, Edmonton, Alberta, Canada.
D W
DW
Spady
L D
LD
Saunders
F
F
Bamforth
D000416:Alberta / Q000453:epidemiology; D001724:Birth Weight; D006801:Humans; D007231:Infant, Newborn; D016015:Logistic Models; D008393:Marriage; D008423:Maternal Age; D008661:Metabolism, Inborn Errors / Q000175:diagnosis / Q000453:epidemiology* / Q000517:prevention & control; D015997:Neonatal Screening / Q000592:standards / Q000706:statistics & numerical data*; D016017:Odds Ratio; D017410:Practice Guidelines as Topic; D011237:Predictive Value of Tests; D012307:Risk Factors; D014600:Utilization Review