TY - JOUR
T1 - International and Interdisciplinary Identification of Health Care Transition Outcomes
AU - Fair, Cynthia
AU - Cuttance, Jessica
AU - Sharma, Niraj
AU - Maslow, Gary
AU - Wiener, Lori
AU - Betz, Cecily
AU - Porter, Jerlym
AU - McLaughlin, Suzanne
AU - Gilleland-Marchak, Jordan
AU - Renwick, Amy
AU - Naranjo, Diana
AU - Jan, Sophia
AU - Javalkar, Karina
AU - Ferris, Maria
AU - International and Interdisciplinary Health Care Transition Research Consortium
A2 - Alriksson-Schmidt, Ann
PY - 2016/3
Y1 - 2016/3
N2 - 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.
AB - 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.
KW - Adolescent
KW - Canada
KW - Delphi Technique
KW - Europe
KW - Female
KW - Humans
KW - Interdisciplinary Communication
KW - International Cooperation
KW - Male
KW - Outcome Assessment, Health Care/methods
KW - Quality of Life
KW - Surveys and Questionnaires
KW - Transition to Adult Care/organization & administration
KW - United States
KW - Young Adult
U2 - 10.1001/jamapediatrics.2015.3168
DO - 10.1001/jamapediatrics.2015.3168
M3 - Article
C2 - 26619178
VL - 170
SP - 205
EP - 211
JO - JAMA Pediatrics
JF - JAMA Pediatrics
SN - 2168-6211
IS - 3
ER -