International and Interdisciplinary Identification of Health Care Transition Outcomes.

2016

205-11

2016 Mar 1

2168-6211

<p><strong>IMPORTANCE: </strong>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.</p>

<p><strong>OBJECTIVE: </strong>To present HCT outcomes identified by a Delphi process with an interdisciplinary group of participants.</p>

<p><strong>DESIGN, SETTING, AND PARTICIPANTS: </strong>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.</p>

<p><strong>EXPOSURES: </strong>Health care transition outcomes of adolescents and young adults with special health care needs.</p>

<p><strong>MAIN OUTCOMES AND MEASURES: </strong>Importance ratings of identified HCT outcomes rated on a Likert scale from 1 (not important) to 9 (very important).</p>

<p><strong>RESULTS: </strong>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.</p>

<p><strong>CONCLUSIONS AND RELEVANCE: </strong>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.</p>

10.1001/jamapediatrics.2015.3168

JAMA Pediatr

26619178

The health care transition research consortium health care transition model: a framework for research and practice.

2014

3-15

2014

1875-8894

<p>The body of health care transition (HCT) research is in the early stages of development. One of the major limitations of this developing field of research is the lack of theoretically-directed studies. This research limitation has hindered understanding of the variables contributing to successful HCT. The inadequate understanding of HCT is due largely to the absence of an adequate conceptual model that addresses the complexity and the relationships amongst variables that influence HCT outcomes among adolescents and emerging adults with special health care needs (AEA-SHCN). Existing conceptual models do not sufficiently address the significant interrelationships amongst variables to explain, predict and/or control AEA-SHCN's biopsychosocial HCT outcomes. This article provides a description of a health care transition theoretical model developed by the international and interdisciplinary Health Care Transition Research Consortium (HCTRC) that can be applied for testing in research and serve as a framework for clinical practice and policymaking. The HCTRC model is composed of four domains that are considered integral to the HCT phenomenon: Individual, Family/Social Support, Environment, and the Health Care System. The HCTRC model specifies the variables, processes, and potential mediators and moderators that affect the HCT outcomes.</p>

10.3233/PRM-140277

J Pediatr Rehabil Med

24919934