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

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, neonata...

Descripción completa

Detalles Bibliográficos
Autores principales: Robertson, Charlene M. T., Sauve, Reg S., Joffe, Ari R., Alton, Gwen Y., Moddemann, Diane M., Blakley, Patricia M., Synnes, Anne R., Dinu, Irina A., Harder, Joyce R., Soni, Reeni, Bodani, Jaya P., Kakadekar, Ashok P., Dyck, John D., Human, Derek G., Ross, David B., Rebeyka, Ivan M.
Formato: Texto
Lenguaje:English
Publicado: SAGE-Hindawi Access to Research 2011
Materias:
Research Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099206/
https://www.ncbi.nlm.nih.gov/pubmed/21629801
http://dx.doi.org/10.4061/2011/965740
_version_ 1782204049459773440
author Robertson, Charlene M. T.
Sauve, Reg S.
Joffe, Ari R.
Alton, Gwen Y.
Moddemann, Diane M.
Blakley, Patricia M.
Synnes, Anne R.
Dinu, Irina A.
Harder, Joyce R.
Soni, Reeni
Bodani, Jaya P.
Kakadekar, Ashok P.
Dyck, John D.
Human, Derek G.
Ross, David B.
Rebeyka, Ivan M.
author_facet Robertson, Charlene M. T.
Sauve, Reg S.
Joffe, Ari R.
Alton, Gwen Y.
Moddemann, Diane M.
Blakley, Patricia M.
Synnes, Anne R.
Dinu, Irina A.
Harder, Joyce R.
Soni, Reeni
Bodani, Jaya P.
Kakadekar, Ashok P.
Dyck, John D.
Human, Derek G.
Ross, David B.
Rebeyka, Ivan M.
author_sort Robertson, Charlene M. T.
collection PubMed
description 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.
format Text
id pubmed-3099206
institution National Center for Biotechnology Information
language English
publishDate 2011
publisher SAGE-Hindawi Access to Research
record_format MEDLINE/PubMed
spelling pubmed-30992062011-05-31 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 Robertson, Charlene M. T. Sauve, Reg S. Joffe, Ari R. Alton, Gwen Y. Moddemann, Diane M. Blakley, Patricia M. Synnes, Anne R. Dinu, Irina A. Harder, Joyce R. Soni, Reeni Bodani, Jaya P. Kakadekar, Ashok P. Dyck, John D. Human, Derek G. Ross, David B. Rebeyka, Ivan M. Cardiol Res Pract Research Article 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. SAGE-Hindawi Access to Research 2011-05-08 /pmc/articles/PMC3099206/ /pubmed/21629801 http://dx.doi.org/10.4061/2011/965740 Text en Copyright © 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.
spellingShingle Research Article
Robertson, Charlene M. T.
Sauve, Reg S.
Joffe, Ari R.
Alton, Gwen Y.
Moddemann, Diane M.
Blakley, Patricia M.
Synnes, Anne R.
Dinu, Irina A.
Harder, Joyce R.
Soni, Reeni
Bodani, Jaya P.
Kakadekar, Ashok P.
Dyck, John D.
Human, Derek G.
Ross, David B.
Rebeyka, Ivan M.
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
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099206/
https://www.ncbi.nlm.nih.gov/pubmed/21629801
http://dx.doi.org/10.4061/2011/965740
work_keys_str_mv AT robertsoncharlenemt theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT sauveregs theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT joffearir theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT altongweny theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT moddemanndianem theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT blakleypatriciam theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT synnesanner theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT dinuirinaa theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT harderjoycer theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT sonireeni theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT bodanijayap theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT kakadekarashokp theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT dyckjohnd theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT humanderekg theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT rossdavidb theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT rebeykaivanm theregistryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT robertsoncharlenemt registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT sauveregs registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT joffearir registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT altongweny registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT moddemanndianem registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT blakleypatriciam registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT synnesanner registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT dinuirinaa registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT harderjoycer registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT sonireeni registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT bodanijayap registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT kakadekarashokp registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT dyckjohnd registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT humanderekg registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT rossdavidb registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren
AT rebeykaivanm registryandfollowupofcomplexpediatrictherapiesprogramofwesterncanadaamechanismforserviceauditandresearchafterlifesavingtherapiesforyoungchildren

Ejemplares similares