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; 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

doi:10.4061/2011/965740

Cardiology Research and Practice (Jan 2011)

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,
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

Charlene M. T. Robertson: Department of Pediatrics, University of Alberta, Edmonton, AB, T6G 2R3, Canada
Reg S. Sauve: Department of Pediatrics, University of Calgary, Calgary, AB, T2N 1N4, Canada
Ari R. Joffe: Department of Pediatrics, University of Alberta, Edmonton, AB, T6G 2R3, Canada
Gwen Y. Alton: Complex Pediatric Therapies Follow-Up Program, Glenrose Rehabilitation Hospital, Room 242, GlenEast, 10230-111 Avenue, Edmonton, AB, T5G 0B7, Canada
Diane M. Moddemann: Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, MB, R3E 0Z2, Canada
Patricia M. Blakley: Department of Pediatrics, University of Saskatchewan, Saskatoon, SK, S7N OW8, Canada
Anne R. Synnes: Department of Pediatrics, University of British Columbia, Vancouver, BC, V6T 1Z4, Canada
Irina A. Dinu: Department of Public Health Sciences, University of Alberta, Edmonton, AB, T6G 2T4, Canada
Joyce R. Harder: Department of Pediatrics, University of Calgary, Calgary, AB, T2N 1N4, Canada
Reeni Soni: Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, MB, R3E 0Z2, Canada
Jaya P. Bodani: Department of Pediatrics, University of Saskatchewan, Saskatoon, SK, S7N OW8, Canada
Ashok P. Kakadekar: Department of Pediatrics, University of Saskatchewan, Saskatoon, SK, S7N OW8, Canada
John D. Dyck: Department of Pediatrics, University of Alberta, Edmonton, AB, T6G 2R3, Canada
Derek G. Human: Division of Pediatric Cardiology, Children’s and Women’s Health Center of B.C., Vancouver, BC, V6H 3V4, Canada
David B. Ross: Department of Surgery, University of Alberta, Edmonton, AB, T6G 2B7, Canada
Ivan M. Rebeyka: Department of Pediatrics, University of Alberta, Edmonton, AB, T6G 2R3, Canada

DOI: https://doi.org/10.4061/2011/965740
Journal volume & issue: Vol. 2011

Abstract

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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.

Published in Cardiology Research and Practice

ISSN: 2090-8016 (Print); 2090-0597 (Online)
Publisher: Wiley
Country of publisher: United Kingdom
LCC subjects: Medicine: Internal medicine: Specialties of internal medicine: Diseases of the circulatory (Cardiovascular) system
Website: https://onlinelibrary.wiley.com/journal/2804

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