Informatics of newborn screening for congenital hypothyroidism in Alberta 2005-08: flow of information from birth to treatment.

OBJECTIVES Alberta maintains a universal screening program for congenital hypothyroidism, a condition which, when treated promptly prevents neurological impairment. Because the program relies on multiple stakeholders working in different areas, it is not known how effective the overall process is in achieving timely treatment initiation. Our objective was to analyze and describe the informatics of this program. METHODS Data were collected from the Newborn Metabolic Screening Program and physician offices for hypothyroidism screen positive infants born between january 1, 2005 and May 31, 2008. Where data were available, times were determined for each interval: birth to sample collection, collection to receipt in central laboratory, receipt to report to the primary clinician, report to confirmatory test, and finally confirmation to thyroxin treatment. RESULTS Complete information was found on the stages up until report generation. Although subsequent intervals had less complete data, all but 5 of the 57 newborns were followed to the endpoint of treatment initiation or diagnosis exclusion. The program was consistent and efficient in collecting, analyzing and reporting results to the primary physician by a median of 8 days (range 4-14 days). Subsequent steps resulted in a median time from birth to treatment of 11 days. There were 4 cases for which delays in clinician follow-up led to treatment initiation at 27, 34, 56 and 70 days. CONCLUSION Newborn screening for congenital hypothyroidism in Alberta is efficient and consistent up until responsibility shifts to the community. Quality improvement work is needed to reduce potential delays.