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Original Investigation |

International and Interdisciplinary Identification of Health Care Transition Outcomes

Cynthia Fair, LCSW, DrPH1; Jessica Cuttance, MS2; Niraj Sharma, MD, MPH3; Gary Maslow, MD, MPH4; Lori Wiener, PhD5; Cecily Betz, PhD, RN6; Jerlym Porter, PhD, MPH7; Suzanne McLaughlin, MD8,9; Jordan Gilleland-Marchak, PhD10; Amy Renwick, MD11; Diana Naranjo, PhD12; Sophia Jan, MD, MSHP13; Karina Javalkar, BA2; Maria Ferris, MD, MPH, PhD2 ; for the International and Interdisciplinary Health Care Transition Research Consortium
[+] Author Affiliations
1Department of Human Service Studies, Elon University, Elon, North Carolina
2End-Stage Kidney Disease Program, University of North Carolina–Chapel Hill
3Medicine-Pediatrics Residency Program, Brigham and Women's and Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts
4Duke University Psychiatry and Behavior Sciences and Pediatrics, Durham, North Carolina
5Pediatric Oncology Branch Center for Cancer Research, National Cancer Institute, Bethesda, Maryland
6Department of Pediatrics, Keck School of Medicine, University of Southern California, Los Angeles
7Department of Psychology, St Jude Children’s Research Hospital, Memphis, Tennessee
8Internal Medicine/Pediatrics, Brown University, Providence, Rhode Island
9Department of Pediatrics and Medicine, Hasbro Hospitals, Providence, Rhode Island
10Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia
11Transition of Care, Nemours/Alfred I. duPont Hospital for Children, Wilmington, Delaware
12Department of Psychiatry, School of Medicine, Stanford University, Stanford, California
13Division of General Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
JAMA Pediatr. 2016;170(3):205-211. doi:10.1001/jamapediatrics.2015.3168.
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Importance  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.

Design, Setting, and Participants  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.

Exposures  Health care transition outcomes of adolescents and young adults with special health care needs.

Main Outcomes and Measures  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 and Relevance  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.

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Figure.
Summary of Activities Connected as Part of the 3-Stage Delphi Process for Defining Health Care Transition (HCT) Outcomes

Stage 1 included an initial list of transition outcomes generated by a literature review, interviews with experts, and facilitated discussions during the 2013 HCT special interest group at a pediatric conference. Stage 2 consisted of a survey sent to members of the HCT Research Consortium (HCTRC) in 2013; members were asked to rate the importance of each outcome from 1 to 10 and to provide free-text comments. Stage 3 involved a survey sent to members of the HCTRC in 2014; members were asked to rate the importance of each outcome from 1 to 9. The order shown here is linked to the outcomes in stage 2. Important items had scores from 7 to 9. HbA1c indicates hemoglobin A1c.

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