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. 2011:2011:965740.
doi: 10.4061/2011/965740. Epub 2011 May 8.

The registry and follow-up of complex pediatric therapies program of Western Canada: a mechanism for service, audit, and research after life-saving therapies for young children

Charlene M T Robertson  1 , Reg S Sauve, Ari R Joffe, Gwen Y Alton, Diane M Moddemann, Patricia M Blakley, Anne R Synnes, Irina A Dinu, Joyce R Harder, Reeni Soni, Jaya P Bodani, Ashok P Kakadekar, John D Dyck, Derek G Human, David B Ross, Ivan M Rebeyka
Affiliations

The registry and follow-up of complex pediatric therapies program of Western Canada: a mechanism for service, audit, and research after life-saving therapies for young children

Charlene M T Robertson et al. Cardiol Res Pract. 2011.

Abstract

Newly emerging health technologies are being developed to care for children with complex cardiac defects. Neurodevelopmental and childhood school-related outcomes are of great interest to parents of children receiving this care, care providers, and healthcare administrators. Since the 1970s, neonatal follow-up clinics have provided service, audit, and research for preterm infants as care for these at-risk children evolved. We have chosen to present for this issue the mechanism for longitudinal follow-up of survivors that we have developed for western Canada patterned after neonatal follow-up. Our program provides registration for young children receiving complex cardiac surgery, heart transplantation, ventricular assist device support, and extracorporeal life support among others. The program includes multidisciplinary assessments with appropriate neurodevelopmental intervention, active quality improvement evaluations, and outcomes research. Through this mechanism, consistently high (96%) follow-up over two years is maintained.

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Figures

Figure 1
Figure 1
Flowchart of death, lost, and assessed children after complex cardiac surgery at ≤6 weeks of age from the year 1996 to 2010; inclusive. hosp d/c = discharge from hospital where surgery took place.
See this image and copyright information in PMC

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