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

Author:

Robertson Charlene M. T.123,Sauve Reg S.45,Joffe Ari R.16,Alton Gwen Y.26,Moddemann Diane M.78,Blakley Patricia M.910,Synnes Anne R.1112,Dinu Irina A.13,Harder Joyce R.414,Soni Reeni715,Bodani Jaya P.916,Kakadekar Ashok P.917,Dyck John D.118,Human Derek G.19,Ross David B.20,Rebeyka Ivan M.120

Affiliation:

1. Department of Pediatrics, University of Alberta, Edmonton, AB, Canada T6G 2R3

2. Complex Pediatric Therapies Follow-Up Program, Glenrose Rehabilitation Hospital, Room 242, GlenEast, 10230-111 Avenue, Edmonton, AB, Canada T5G 0B7

3. Pediatric Rehabilitation Outcomes Evaluation and Research Unit, Glenrose Rehabilitation Hospital, Room 242, GlenEast, 10230-111 Avenue, Edmonton, AB, Canada T5G 0B7

4. Department of Pediatrics, University of Calgary, Calgary, AB, Canada T2N 1N4

5. Perinatal Follow-Up Clinic, Alberta Children’s Hospital, Calgary, AB, Canada T3B 6AB

6. Pediatric Intensive Care Unit, Stollery Children’s Hospital, Edmonton, AB, Canada T6G 2B7

7. Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, MB, Canada R3E 0Z2

8. Neonatal Follow-Up Clinic, Children’s Hospital of Winnipeg, Winnipeg, MB, Canada R3A 1S1

9. Department of Pediatrics, University of Saskatchewan, Saskatoon, SK, Canada S7N OW8

10. Alvin Buckwold Child Development Program, Kinsmen Children’s Center, Saskatoon, SK, Canada S7N 2Z1

11. Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada V6T 1Z4

12. Neonatal Follow-Up Program, Children’s and Women’s Health Center of B.C., Vancouver, BC, Canada V6H 3V4

13. Department of Public Health Sciences, University of Alberta, Edmonton, AB, Canada T6G 2T4

14. Pediatric Cardiology, Alberta Children’s Hospital, Calgary, AB, Canada T3B 6A8

15. Section of Pediatric Cardiology, Children’s Hospital of Winnipeg, Winnipeg, MB, Canada R3E 0Z2

16. Developmental Follow-Up Clinic, Regina General Hospital, Regina, SK, Canada S7N OW8

17. Division of Pediatric Cardiology, Royal University Hospital, Saskatoon, SK, Canada S7N OW8

18. Division of Pediatric Cardiology, Stollery Children’s Hospital, Edmonton, AB, Canada T6G 2B7

19. Division of Pediatric Cardiology, Children’s and Women’s Health Center of B.C., Vancouver, BC, Canada V6H 3V4

20. Department of Surgery, University of Alberta, Edmonton, AB, Canada T6G 2B7

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.

Funder

Stollery Children’s Hospital

Publisher

Hindawi Limited

Subject

Cardiology and Cardiovascular Medicine

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