title: Transition to adult health care for adolescents and young adults with congenital heart disease: perspectives of the patient, parent and health care provider.
abstract: BACKGROUND
  Pediatric institutions play a large role in preparing young adults with congenital heart disease to transition to adult care.
  
  
  OBJECTIVE
  To determine the perspectives of patients, parents and providers on transition preparation.
  
  
  METHODS
  Patients aged nine to 18 years with congenital heart defects and their respective parent(s) participated in semistructured interviews. Health care providers completed a self-administered survey.
  
  
  RESULTS
  A total of 23 patients, 22 parents and 45 health care providers were enrolled in the study. Only 36% of patients demonstrated a clear understanding of transition and its implications for their cardiac care. Parents were extensively involved in care activities, with 95% accompanying their child to visits at the clinic, 68% staying with their child for the entire visit and 45% administering their medication. Children more knowledgeable about their diagnosis demonstrated a better understanding about their transition to adult care (100% versus 7%, respectively; P<0.01) and were more likely to communicate directly with their providers than those who were less or not knowledgeable (88% versus 33%, respectively; P=0.03). Nurses were more likely than physicians to view increased parental involvement in care activities as a barrier to transition preparation (37% versus 5%, respectively; P=0.02).
  
  
  CONCLUSIONS
  A lack of clear role expectations indicates a need for the pediatric health care setting to adapt appropriately to address the shifting needs of adolescent and young adult patients and their families. A formalized approach to transition preparation for adolescents with congenital heart disease needs to emphasize comprehensive education. A delegation of explicit responsibilities and the clear definition of roles for parents, providers and patients are necessary to provide young adults with the resources and support necessary to achieve a successful transition to adult care.
authors.affiliation: Division of Cardiology, Department of Pediatrics, University of Toronto, The Labbatt Family Heart Centre, The Hospital for Sick Children, Toronto, Ontario M5G 1X8, Canada.
authors.forename: Nadia A
authors.initials: NA
authors.lastname: Clarizia
authors.forename: Nita
authors.initials: N
authors.lastname: Chahal
authors.forename: Cedric
authors.initials: C
authors.lastname: Manlhiot
authors.forename: Jennifer
authors.initials: J
authors.lastname: Kilburn
authors.forename: Andrew N
authors.initials: AN
authors.lastname: Redington
authors.forename: Brian W
authors.initials: BW
authors.lastname: McCrindle
mesh_terms: D000293:Adolescent; D002648:Child; D003266:Continuity of Patient Care / Q000639:trends*; D005260:Female; D005500:Follow-Up Studies; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel / Q000458:organization & administration*; D019456:Health Transition; D006330:Heart Defects, Congenital / Q000453:epidemiology / Q000628:therapy*; D006801:Humans; D008297:Male; D009017:Morbidity; D009864:Ontario / Q000453:epidemiology; D017063:Outcome Assessment, Health Care; D010044:Outpatient Clinics, Hospital / Q000458:organization & administration*; D010290:Parents; D010360:Patient Transfer / Q000706:statistics & numerical data