Article thumbnail

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

By 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 and Ivan M. Rebeyka

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

Topics: Research Article
Publisher: SAGE-Hindawi Access to Research
OAI identifier: oai:pubmedcentral.nih.gov:3099206
Provided by: PubMed Central

To submit an update or takedown request for this paper, please submit an Update/Correction/Removal Request.

Suggested articles

Citations

  1. (2009). A .M a j n e m e r ,C .L i m p e r o p o u l o s ,M .I .S h e v e l l ,C .R o h l i c e k
  2. (2009). A n d e r s o n ,C .M .T .R o b e r t s o n ,A .R .J o ffee ta l . ,“ P r e v a -lence and profile of cerebral palsy four years after newborn complex heart surgery,” American Academy for Cerebral Palsy and Developmental Medicine,
  3. (2011). a n s e n ,A .R .J o ffe, A. Nettel-Aguirre et al., “Two-year survival and neurodevelopmental outcomes after cardiopulmonary resuscitation in neonatal patients after complex cardiac surgery,”
  4. (2004). Academic performance and behavioral difficulties after neonatal and infant heart surgery,”
  5. (2007). Airway pathologic abnormalities in symptomatic children with congenital cardiac and vascular disease,”
  6. (2002). An MRI study of neurological injury before and after congenital heart disease,”
  7. (2003). Applying the international classification of functioning, disability and health (ICF) to measure childhood disability,”
  8. (2009). B e l l i n g e r ,J .W .N e w b u r g e r ,D .W y p i j ,K .C .K .K u b a n ,A
  9. (2001). Behaviour Rating Inventory of Executive Function—Parent Form, Psychological Assessment Resources Inc.,
  10. (2004). C.R.ReynoldsandR.W.Kamphaus,ManualfortheBehaviour Assessment System for Children,A m e r i c a nG u i d a n c eS e r v i c e s
  11. (2005). Central nervous systemoutcomesin children with complexcongenital heart disease,”
  12. (2007). Clinical and Interpretative Manual for the NEPSY—II, The Psychological Corporation,
  13. (2004). Clinical Evaluation of Language Fundamentals,
  14. (1997). Cognitive and motor development in preschool and school-aged children after neonatal arterial switch operation,”
  15. (1984). Cognitive function and age at repair of transposition of the great arteries in children,”
  16. (2006). Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease,”
  17. (2006). Current status of neonatal follow-up
  18. (2000). D.Casarett,J.H.T.Karlawish,andJ.Sugarman,“Determining when quality improvement initiatives should be considered research: proposed criteria and potential implications,”
  19. (2004). Developing a follow-up survey focused on participation of children and youth with acquired brain injuries after discharge from inpatient rehabilitation,”
  20. (2001). Diagnosis and treatment of feeding disorders in children with developmental disabilities,”
  21. (1999). Du Piessis, “Mechanisms of brain injury during infant cardiac surgery,”
  22. (2007). Early childhood health, growth, and neurodevelopmental outcomes after complete repair of total anomalous pulmonary venous connection at 6 weeks or younger,”
  23. (1991). Efficacy of early intervention in pediatric rehabilitation: a decade of evaluation and review,”
  24. (2010). Emotional, behavioral and adaptive outcomes at 5 years of age for children with complex cardiac surgery at 6 weeks of age or younger,”
  25. (2008). Five-year neurocognitive andhealthoutcomesafterneonatalArterialSwitchoperation,”
  26. (2006). Follow-up of children who received complex invasive therapies early
  27. (2003). G a y n o r ,M .G e r d e s ,E .H .Z a c k a ie ta l . ,“ A p o l i p o p r o t e i nE genotype and neurodevelopmental sequelae of infant cardiac surgery,”
  28. (2010). G u e r r a ,C .M .T .R o b e r t s o n ,G .Y .A l t o ne ta l . ,“ E ffect of sedatives and analgesia drugs on the neurodevelopmental outcome of neonates after cardiac surgery,”
  29. (2005). h e u n g ,N .C h u i
  30. (2008). Inattention, hyperactivity, and school performance in a population of schoolagechildren withcomplexcongenitalheartdisease,”Pediatrics,
  31. (2006). Intermediate-term outcomes of the arterial switch operation for transposition of great arteries in neonates: alive but well?”
  32. (1998). K e r n ,V .J .H i n t o n
  33. (2010). l a c k w o o d ,A .R .J o
  34. (2003). Length of stay after infant heart surgery is related to cognitive outcome at age 8 years,”
  35. (2003). Long-term follow-up of term infants with perinatal asphyxia,”
  36. (2006). M.Miatton,D.De Wolf,K.Franc ¸ois,E.Thiery, andG.Vingerhoets, “Neurocognitive consequences of surgically corrected congenital heart defects: a review,”
  37. (2003). Manual for the Adaptive Behavior Assessment System, The Psychological Corporation,
  38. (2006). Manual for the Bayley Scales of Infant and Toddler Development, The Psychological Corporations,
  39. (2002). Manual for the Preschool and Primary Scale of Intelligence,The PsychologicalCorporation,SanAntonio,Tex,
  40. (2001). Manual for the Wechsler Individual Achievement Test, The Psychological Corporation,
  41. (2004). Manual of the Intelligence Scale for Children,T h e Psychological Corporation,
  42. (2000). Manualforthe Achenbach SystemofEmpirically BasedAssessment,UniversityofVermont, Research Center for Children, Youth, and Families,
  43. (2007). Mortality after neonatal cardiac surgery: prediction from mean arterial pressure after rewarming in the operating room,”
  44. (2007). Movement Assessment Battery for Children, Harcourt Assessment,
  45. (2006). Neonatal follow-up programs and follow-up studies: historical and current perspectives,”
  46. (2007). Neurocognitive, functional, and health outcomes at 5 years of age for children after complex cardiac surgery at 6 weeks of age or younger,”
  47. (2007). Neurological Assessment in the First Two Years of Life: Instruments for the Follow-Up of High Risk Newborns.
  48. (2006). NIH policy of reporting race and ethnicitydata: subjects in clinical research,
  49. (2007). Outcomes following surgery for congenital heart disease in low-birthweight infants,”
  50. (2004). Outcomes from an interprovincial program of newborn open heart surgery,”
  51. Outcomesafter heart transplantationin children under six years of age,” The Annals of Thoracic Surgery.
  52. (1999). Parent-child relationship disorders: what do the child vulnerability scale and the parent protection scale measure?”
  53. (2007). Patient characteristics are importantdeterminants ofneurodevelopmental outcome at one year of age after neonatal and infant cardiac surgery,”
  54. (2001). PedsQLTM 4.0: reliability and validity of the pediatric quality of life inventoryTMv e r s i o n4 . 0g e n e r i cc o r es c a l e si nh e a l t h ya n dp a t i e n t populations,”
  55. (2007). position statement:principlesandguidelinesforearlyhearingdetection and intervention programs,”
  56. (2007). S.P.Miller,P.S.McQuillen,S.Hamricketal.,“Abnormalbrain development in newborns with congenital heart disease,” New England
  57. (1981). socioeconomic index for occupations in
  58. (2000). Temporal variability in birth prevalence of cardiovascular malformations,”
  59. (2004). The American Academy of Pediatrics, “Follow-up care of high-risk infants,”
  60. (1986). The efficacy of early intervention programs: a meta-analysis,” Exceptional children,
  61. (2004). The genetic contribution to congenital heart disease,”
  62. (2003). The Pediatric Quality of Life InventoryTM in children with heart disease,”
  63. (2007). Two-year general and neurodevelopmental outcome after neonatal complex cardiac surgery in patients with deletion 22q11.2: a comparative study,”
  64. (2009). Two-year neurodevelopmental outcomes of infants undergoing neonatal cardiac surgery for interrupted aortic arch: a descriptive analysis,”
  65. (2008). Two-year survival and mental and psychomotor outcomes after the Norwood procedure: an analysis of the modified Blalock-Taussig shunt and right ventricle-to-pulmonary artery shunt surgical eras,”
  66. (2008). Twoyear survival, mental, and motor outcomes after cardiac extracorporeal life support at less than five years of age,”
  67. (2000). Using the Strengths and Difficulties Questionnaire (SDQ) to screen for child psychiatric disorders in a community sample,”
  68. (2009). Williamson,“Is “Treat your child normally”helpful advice for parents of survivors of treatment of hypoplastic left heart syndrome?”