Adolescent to Adult HIV Health Care Transition from the Perspective of Adult Providers in the United States
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Journal of Adolescent Health 61 (2017) 434e439 www.jahonline.org Original article Adolescent to Adult HIV Health Care Transition From the Perspective of Adult Providers in the United States Amanda E. Tanner, Ph.D., M.P.H. a,*, Morgan M. Philbin, Ph.D., M.H.S. b, Alice Ma, M.P.H. a, Brittany D. Chambers, Ph.D., M.P.H. a, Sharon Nichols, Ph.D. c, Sonia Lee, Ph.D., M.A. d, J. Dennis Fortenberry, M.D., M.S. e; and the Adolescent Trials Network for HIV/AIDS Interventions a Department of Public Health Education, University of North Carolina Greensboro, Greensboro, North Carolina b Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York City, New York c Department of Neurosciences, University of California, San Diego, California d Maternal and Pediatric Infectious Disease Branch, National Institute of Child Health and Human Development, Bethesda, Maryland e Section of Adolescent Medicine, Indiana University School of Medicine, Indianapolis, Indiana Article history: Received January 24, 2017; Accepted May 3, 2017 Keywords: Adolescents; Health care transition; HIV; HIV care; Youth See Related Editorial p. 407 ABSTRACT IMPLICATIONS AND CONTRIBUTION Purpose: The HIV Care Continuum highlights the need for HIV-infected youth to be tested, linked, and maintained in lifelong care. Care engagement is important for HIV-infected youth in order for Extant research suggests them to stay healthy, maintain a low viral load, and reduce further transmission. One point of that adolescent clinics are potential interruption in the care continuum is during health care transition from adolescent- to primarily responsible for adult-centered HIV care. HIV-related health care transition research focuses mainly on youth and preparing youth to transi- ’ on adolescent clinic providers; missing is adult clinic providers perspectives. tion to adult care, yet the Methods: We examined health care transition processes through semi-structured interviews with role of the adult clinic in 28 adult clinic staff across Adolescent Trials Network sites. We also collected quantitative data HIV transition has been related to clinical characteristics and transition-specific strategies. largely ignored. These re- Results: Overall, participants described health care transition as a “warm handoff” and a collab- sults suggest that adult orative effort across adolescent and adult clinics. Emergent transition themes included adult and adolescent clinic clinical care culture (e.g., patient responsibility), strategies for connecting youth to adult care (e.g., involvement is essential to adolescent clinic staff attending youth’s first appointment at adult clinic), and approaches to provide coordinated care evaluating transition outcomes (e.g., data sharing). Participants provided transition improvement during HIV-related health recommendations (e.g., formalized protocols). care transition. Conclusions: Using evidence-based research and a quality improvement framework to inform comprehensive and streamlined transition protocols can help enhance the capacity of adult clinics to collaborate with adolescent clinics to provide coordinated and uninterrupted HIV-related care and to improve continuum of care outcomes. Ó 2017 Society for Adolescent Health and Medicine. All rights reserved. Conflicts of Interest: The authors have no conflicts of interest to disclose. Disclaimer: The comments and views of the authors do not necessarily represent the views of the Eunice Kennedy Shriver National Institute of Child Health and Human Development. * Address correspondence to: Amanda E. Tanner, Ph.D., M.P.H., Department of Public Health Education, University of North Carolina Greensboro, PO Box 26170, Greensboro, NC 27402-6170. E-mail address: [email protected] (A.E. Tanner). 1054-139X/Ó 2017 Society for Adolescent Health and Medicine. All rights reserved. http://dx.doi.org/10.1016/j.jadohealth.2017.05.011 A.E. Tanner et al. / Journal of Adolescent Health 61 (2017) 434e439 435 HIV rates in the United States (U.S.) continue to rise among participating ATN sites approved the study protocol. All in- youth (ages 13e24 years), who account for 22% of all new HIV terviewees provided verbal consent. infections [1]. The HIV Care Continuum highlights the need for HIV-infected youth to be tested, linked, and maintained in care as Qualitative data part of achieving optimal health [2]. However, fewer than half of Twenty-eight semi-structured interviews were conducted HIV-infected youth in the U.S. know their status, only one quarter with medical and social service providers (e.g., case managers, are engaged in care, and approximately 6% achieve viral sup- nurses, physicians, and social workers). Purposive sampling was pression; in contrast, 51% of adults are engaged in care and 28% used to choose individuals whose role included receiving and are virally suppressed [2,3]. Indeed, there are many factors across supporting youth as they transitioned from pediatric/adolescent diagnostic and care systems that challenge youth’s ability to to adult clinical HIV care. This provided a comprehensive progress through the care continuum [4]. One stage that has assessment of the transition processes and protocols and received scant attention is during the transition from adolescent illuminated the role of context in facilitating transition. In- to adult HIV care. terviews occurred from August 2015 to June 2016 and lasted Although transition to adult care is important for adolescents approximately 45 minutes (range: 23e54 minutes); they were living with a variety of noninfectious chronic diseases [5], conducted over the phone, digitally recorded, and professionally including diabetes [6] and cancer [7], it is especially critical for transcribed. Interviewers prepared field notes after each HIV-infected youth in order for them to remain healthy, maintain interview. a low viral load, and reduce further transmission [8,9]. Approx- Interviewers used a topic guide that focused on site-specific imately 25,000 HIV-infected youths are scheduled to transition organization and characteristics; transition processes and in the next decade [10], demonstrating the need for effective protocols; facilitators and barriers to transition; and relation- transition approaches to support care engagement and ships with adolescent clinics. Prior HIV and other chronic continued treatment in adult HIV care settings. Initially, suc- disease transition research informed interview questions. cessful transitions do not necessary suggest long-term engage- Questions focused on (in order) clinic-specific characteristics ment [11]; only 50% of youth who successfully transition were (e.g., What is your patient population? Do you have relation- retained in adult care after 1 year [12]. ships with adolescent care clinics? How is your clinic different To improve the transition process for HIV-infected youth, the from the youths’ adolescent clinics?), site-specific transition American Academy of Pediatrics [13] released recommendations process and protocols (e.g., What does your process look like for HIV-related health care transition: (1) development of writ- for receiving transitioning youth? What are ways to facilitate ten policies to guide transition; (2) joint creation of a transition transition?), descriptions of health care transition (e.g., Can plan by youth, family, and providers; (3) planned facilitation of you describe a representative example of a recent transitioning youths’ connection to adult clinics as transition is initiated; and youth?), factors affecting health care transition (e.g., What do (4) communication between adolescent and adult clinics during you consider indicators of “successful” transition? Do you have the transition process for quality assurance review. However, a sense of drop out at transition? How do you reengage those these guidelines and previous HIV-related transition research who drop out?), and transition recommendations (e.g., What focus almost exclusively on adolescents and adolescent/young suggestions do you have for how to keep youth in care during adult clinics [14e17]. The adult clinic perspective is missing, transition?). although it plays a critical role in health care transition [12,15,18]. The constant comparative method [20,21] was applied to Understanding adult providers’ attitudes and comfort in treating examine how providers described and approached health care youth is essential to ascertain preparation gaps and needs. transition. Two researchers trained in qualitative research Accordingly, this study examined HIV-related health care tran- methods independently read and coded each transcript to create sition approaches and processes for behaviorally infected youth an initial codebook. Subsequently, a list of thematic codes based from the perspectives of adult clinic staff. on the literature was incorporated to ensure that both theory- Methods based and emergent concepts were included. This codebook was then reviewed by other team members [22]. A data table was fi As part of the larger Comprehensive Assessment of Transi- created to summarize and re ne codes [21]; then, a matrix was ’ tion and Coordination for HIV-Positive Youth as they Move from developed to compare adult clinics descriptions of health care Adolescent to Adult Care (CATCH) study, data were collected transition processes, which included differences between and fi from adult clinics that received youths who were transitioning within adult clinics. Researchers applied the nalized coding from Adolescent Trials