title: International and Interdisciplinary Identification of Health Care Transition Outcomes.
abstract: OBJECTIVE
  There is a lack of agreement on what constitutes successful outcomes for the process of health care transition (HCT) among adolescent and young adults with special health care needs.
  
  
  OBJECTIVE
  To present HCT outcomes identified by a Delphi process with an interdisciplinary group of participants.
  
  
  METHODS
  A Delphi method involving 3 stages was deployed to refine a list of HCT outcomes. This 18-month study (from January 5, 2013, of stage 1 to July 3, 2014, of stage 3) included an initial literature search, expert interviews, and then 2 waves of a web-based survey. On this survey, 93 participants from outpatient, community-based, and primary care clinics rated the importance of the top HCT outcomes identified by the Delphi process. Analyses were performed from July 5, 2014, to December 5, 2014.
  
  
  METHODS
  Health care transition outcomes of adolescents and young adults with special health care needs.
  
  
  METHODS
  Importance ratings of identified HCT outcomes rated on a Likert scale from 1 (not important) to 9 (very important).
  
  
  RESULTS
  The 2 waves of surveys included 117 and 93 participants as the list of outcomes was refined. Transition outcomes were refined by the 3 waves of the Delphi process, with quality of life being the highest-rated outcome with broad agreement. The 10 final outcomes identified included individual outcomes (quality of life, understanding the characteristics of conditions and complications, knowledge of medication, self-management, adherence to medication, and understanding health insurance), health services outcomes (attending medical appointments, having a medical home, and avoidance of unnecessary hospitalization), and a social outcome (having a social network). Participants indicated that different outcomes were likely needed for individuals with cognitive disabilities.
  
  
  CONCLUSIONS
  Quality of life is an important construct relevant to HCT. Future research should identify valid measures associated with each outcome and further explore the role that quality of life plays in the HCT process. Achieving consensus is a critical step toward the development of reliable and objective comparisons of HCT outcomes across clinical conditions and care delivery locations.
authors.affiliation: Department of Human Service Studies, Elon University, Elon, North Carolina.
authors.forename: Cynthia
authors.initials: C
authors.lastname: Fair
authors.affiliation: End-Stage Kidney Disease Program, University of North Carolina-Chapel Hill.
authors.forename: Jessica
authors.initials: J
authors.lastname: Cuttance
authors.affiliation: Medicine-Pediatrics Residency Program, Brigham and Women's and Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
authors.forename: Niraj
authors.initials: N
authors.lastname: Sharma
authors.affiliation: Duke University Psychiatry and Behavior Sciences and Pediatrics, Durham, North Carolina.
authors.forename: Gary
authors.initials: G
authors.lastname: Maslow
authors.affiliation: Pediatric Oncology Branch Center for Cancer Research, National Cancer Institute, Bethesda, Maryland.
authors.forename: Lori
authors.initials: L
authors.lastname: Wiener
authors.affiliation: Department of Pediatrics, Keck School of Medicine, University of Southern California, Los Angeles.
authors.forename: Cecily
authors.initials: C
authors.lastname: Betz
authors.affiliation: Department of Psychology, St Jude Children's Research Hospital, Memphis, Tennessee.
authors.forename: Jerlym
authors.initials: J
authors.lastname: Porter
authors.affiliation: Internal Medicine/Pediatrics, Brown University, Providence, Rhode Island9Department of Pediatrics and Medicine, Hasbro Hospitals, Providence, Rhode Island.
authors.forename: Suzanne
authors.initials: S
authors.lastname: McLaughlin
authors.affiliation: Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia.
authors.forename: Jordan
authors.initials: J
authors.lastname: Gilleland-Marchak
authors.affiliation: Transition of Care, Nemours/Alfred I. duPont Hospital for Children, Wilmington, Delaware.
authors.forename: Amy
authors.initials: A
authors.lastname: Renwick
authors.affiliation: Department of Psychiatry, School of Medicine, Stanford University, Stanford, California.
authors.forename: Diana
authors.initials: D
authors.lastname: Naranjo
authors.affiliation: Division of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
authors.forename: Sophia
authors.initials: S
authors.lastname: Jan
authors.affiliation: End-Stage Kidney Disease Program, University of North Carolina-Chapel Hill.
authors.forename: Karina
authors.initials: K
authors.lastname: Javalkar
authors.affiliation: End-Stage Kidney Disease Program, University of North Carolina-Chapel Hill.
authors.forename: Maria
authors.initials: M
authors.lastname: Ferris
mesh_terms: D000293:Adolescent; D002170:Canada; D003697:Delphi Technique; D005060:Europe; D005260:Female; D006801:Humans; D033183:Interdisciplinary Communication; D007391:International Cooperation; D008297:Male; D017063:Outcome Assessment, Health Care / Q000379:methods*; D011788:Quality of Life; D011795:Surveys and Questionnaires; D060305:Transition to Adult Care / Q000458:organization & administration*; D014481:United States; D055815:Young Adult