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Canadian Journal of Public Health

, Volume 102, Issue 1, pp 64–67 | Cite as

Informatics of Newborn Screening for Congenital Hypothyroidism in Alberta 2005–08: Flow of Information From Birth to Treatment

  • Jonathan M. DawrantEmail author
  • Daniele Pacaud
  • Andrew Wade
  • Shaina Archer
  • Fiona J. Bamforth
Quantitative Research
  • 1 Downloads

Abstract

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.

Key words

Newborn screening congenital hypothyroidism health informatics 

Résumé

Objectifs

L’Alberta administre un programme de dépistage universel de l’hypothyroïdie congénitale, une affection qui peut entraîner des déficiences neurologiques si elle n’est pas traitée promptement. Comme le programme fait appel à de nombreux intervenants qui travaillent dans différents secteurs, on ignore si le processus est efficace, dans l’ensemble, pour amorcer des traitements en temps utile. Nos objectifs étaient d’analyser et de décrire les données informatiques de ce programme.

Méthode

Les données provenaient du programme de dépistage métabolique néonatal de l’Alberta et des rapports des cabinets de médecins sur les nourrissons atteints d’hypothyroïdie nés entre le 1er janvier 2005 et le 31 mai 2008. Lorsqu’il était possible de le faire, nous avons déterminé les dates de chacun des intervalles suivants: de la naissance à la cueillette de l’échantillon; de la cueillette à la réception au laboratoire central; de la réception à la communication du résultat au clinicien de premier recours; de la communication au test confirmatoire; et enfin de la confirmation au traitement par thyroxine.

Résultats

Nos renseignements étaient complets à tous les stades jusqu’à celui de la communication du résultat. Pour les intervalles suivants, nos données étaient moins complètes, mais seuls 5 des 57 nouveau-nés n’ont pas été suivis jusqu’au stade final (amorce du traitement ou diagnostic d’exclusion). Le programme était cohérent et efficient pour ce qui est de la collecte, de l’analyse et de la communication des résultats aux médecins de premier recours en 8 jours environ (valeur médiane), l’intervalle étant de 4 à 14 jours. En incluant toutes les étapes, le temps médian de la naissance au traitement était de 11 jours. Dans quatre cas, des retards dans le suivi par le clinicien ont reporté l’amorce du traitement, qui a eu lieu après 27, 34, 56 et 70 jours, respectivement.

Conclusion

Le dépistage néonatal de l’hypothyroïdie congénitale en Alberta est efficient et cohérent jusqu’au stade où la responsabilité du programme revient à la communauté. Il faudrait apporter des améliorations qualitatives pour réduire les retards possibles.

Mots clés

dépistage néonatal hypothyroïdie congénitale informatique Médicale 

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Copyright information

© The Canadian Public Health Association 2011

Authors and Affiliations

  • Jonathan M. Dawrant
    • 1
    Email author
  • Daniele Pacaud
    • 1
  • Andrew Wade
    • 1
  • Shaina Archer
    • 2
  • Fiona J. Bamforth
    • 2
  1. 1.Department of PediatricsAlberta Children’s Hospital/University of CalgaryCalgaryCanada
  2. 2.Department of Laboratory Medicine and Pathology, Laboratory ServicesAlberta Health ServicesEdmontonCanada

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