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

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dc.contributor.authorRobertson, Charlene M. T.
dc.contributor.authorSauve, Reg S.
dc.contributor.authorJoffe, Ari R.
dc.contributor.authorAlton, Gwen Y.
dc.contributor.authorModdemann, Diane M.
dc.contributor.authorBlakley, Patricia M.
dc.contributor.authorSynnes, Anne R.
dc.contributor.authorDinu, Irina A.
dc.contributor.authorHarder, Joyce R.
dc.contributor.authorSoni, Reeni
dc.contributor.authorBodani, Jaya P.
dc.contributor.authorKakadekar, Ashok P.
dc.contributor.authorDyck, John D.
dc.contributor.authorHuman, Derek G.
dc.contributor.authorRoss, David B.
dc.contributor.authorRebeyka, Ivan M.
dc.date.accessioned2018-09-27T11:55:59Z
dc.date.available2018-09-27T11:55:59Z
dc.date.issued2011-05-08
dc.date.updated2018-09-27T11:55:59Z
dc.description.abstractNewly 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.
dc.description.versionPeer Reviewed
dc.identifier.citationCharlene M. T. Robertson, Reg S. Sauve, Ari R. Joffe, et al., “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,” Cardiology Research and Practice, vol. 2011, Article ID 965740, 11 pages, 2011. doi:10.4061/2011/965740
dc.identifier.doihttps://doi.org/10.4061/2011/965740
dc.identifier.urihttp://hdl.handle.net/1880/108393
dc.language.rfc3066en
dc.rights.holderCopyright © 2011 Charlene M. T. Robertson et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
dc.titleThe 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
dc.typeJournal Article
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