Coverage of neonatal screening: failure of coverage or failure of information system

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Abstract
OBJECTIVES: To evaluate neonatal screening coverage using data routinely collected on the laboratory computer.SUBJECTS: 90 850 births in 14 North East Thames community provider districts over a 21 month period.METHODS: Births notified to local child health computers are electronically copied to the neonatal laboratory computer system, and incoming Guthrie cards are matched against these birth records before testing. The computer records for the study period were processed to estimate the coverage of the screening programme.RESULTS: Out of an estimated 90 850 births notified to child health computers, all but 746 (0.82%) appeared to have been screened or could be otherwise accounted for (0.14% in non-metropolitan districts, 0.39% in suburban districts, and 1.68% in inner city districts). A further 893 resident infants had been tested, but could not be matched to the list of notified resident births. The calculated programme coverage already exceeds the 99.5% National Audit Programme standard in 7/14 districts. Elsewhere it is not clear whether it is coverage or recording of coverage that is low.CONCLUSION: Previous reports of low coverage may have been exaggerated. High coverage can be shown using routine information systems. Design of information systems that deliver accurate measures of coverage would be more useful than comparison of inadequately measured coverage with a national standard. The new NHS number project will create an opportunity to achieve this.Key messages: Coverage of neonatal screening is higher than recent reports suggest, but it is difficult to distinguish failure to screen from failure to record screening Coverage of neonatal screening must be monitored accurately both for clinical and public health reasons The new system for issuing NHS numbers at birth will provide a basis for a reliable information system of neonatal screening A national network encompassing neonatal laboratories and maternity and child health computers is needed to ensure that testing is carried out and the results recorded, regardless of where the parents are living, where the sample is taken, and where the tests are carried out