title: Transition and transfer of adolescents and young adults with pediatric onset chronic disease: the patient and parent perspective.
abstract: OBJECTIVE
  To determine patients' and parents' perceptions regarding the delivery of transition education and perceived barriers to transfer to adult oriented care.
  
  
  METHODS
  A self-report survey was administered to a convenience sample of patients (16-25 years old) with various childhood onset chronic diseases. A similar survey was administered to their parents/guardians.
  
  
  RESULTS
  A total of 155 patients and 104 parents participated in the study. The mean age of patients was 18.8 ± 2.3 years; 57% were female. Although most patients and parents reported receiving information and training about their medical condition, significant gaps in other aspects of transition education were identified. These included stated deficiencies in education regarding unprotected intercourse, health of future offspring, birth control, pregnancy, illicit drug use, and future career or vocation counseling. Commonly cited barriers to transfer were emotional attachments and lack of adult medicine specialty providers; however, the majority anticipated being ready to transfer to adult oriented care by age 25 years.
  
  
  CONCLUSIONS
  There are significant gaps in the delivery of transition education as perceived by patients and their parents. Standardization of transition education may help ensure that patients acquire the knowledge and skills for health care self-management in adulthood and successful transfer to adult oriented care.
authors.affiliation: Lucile Packard Children's Hospital at Stanford, Palo Alto, CA, USA Department of Cardiology, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Susan M
authors.initials: SM
authors.lastname: Fernandes
authors.affiliation: Department of Surgery/Nursing, Boston Children's Hospital, Division of Nursing, Curry College, Boston, MA, USA.
authors.forename: Joanne
authors.initials: J
authors.lastname: O'Sullivan-Oliveira
authors.affiliation: Department of Cardiology, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Landzberg
authors.affiliation: Department of Medicine, Montreal Heart Institute, Montreal, Canada.
authors.forename: Paul
authors.initials: P
authors.lastname: Khairy
authors.affiliation: Center for Patient Safety and Quality Research, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Patrice
authors.initials: P
authors.lastname: Melvin
authors.affiliation: Department of Medicine, Division of Pulmonary and Respiratory Diseases, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Gregory S
authors.initials: GS
authors.lastname: Sawicki
authors.affiliation: Center for Patient Safety and Quality Research, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Sonja
authors.initials: S
authors.lastname: Ziniel
authors.affiliation: Dana-Farber Cancer Institute and Department of Medicine, Division of Hematology and Oncology, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Lisa B
authors.initials: LB
authors.lastname: Kenney
authors.affiliation: Department of Medicine, Division of Endocrinology, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Katharine C
authors.initials: KC
authors.lastname: Garvey
authors.affiliation: Department of Medicine, Division of Hematology and Oncology, Boston Medical Center, Boston, MA, USA.
authors.forename: Amy
authors.initials: A
authors.lastname: Sobota
authors.affiliation: Department of Adolescent Medicine, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Rebecca
authors.initials: R
authors.lastname: O'Brien
authors.affiliation: Department of Medicine, Division of Immunology, Boston Children's Hospital and Center for Adults with Pediatric Rheumatic Illness, Brigham and Women's Hospital, Boston, MA, USA.
authors.forename: Peter A
authors.initials: PA
authors.lastname: Nigrovic
authors.affiliation: Department of Medicine, Division of General Medicine, Brigham and Women's Hospital and Department of Medicine, Division of Pediatrics, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Niraj
authors.initials: N
authors.lastname: Sharma
authors.affiliation: Department of Medicine, Division of Gastroenterology, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Laurie N
authors.initials: LN
authors.lastname: Fishman
mesh_terms: D000293:Adolescent; D000328:Adult; D002908:Chronic Disease / Q000534:rehabilitation*; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D010353:Patient Education as Topic; D010361:Patients / Q000523:psychology*; D057566:Self Report; D060305:Transition to Adult Care; D055815:Young Adult
keywords: Health care transition; health care self-management; pediatric onset chronic disease