Transitional Care for Adolescents with HIV: Characteristics and Current Practices of the Adolescent Trials Network Systems of Care

Background: Advances in antiretroviral therapy have resulted in a significant increase in life expectancy for HIV-infected individuals, with more pediatric patients transitioning to adult care. The transition process from pediatric to adult care for adolescents with chronic diseases, such as HIV, is always a challenge. Purpose: The purpose of this secondary data analysis was to describe the characteristics, processes and practice models used by the Adolescent Trials Network (ATN) systems of care that assist adolescents with HIV disease to transition from child-centered care to adult-centered care. Method: This study used health care providers affiliated with the Adolescent Trials Network of HIV/AIDS Interventions (ATN) as key informants. One to three representatives from each site considered to be the most knowledgeable staff member(s) involved with their clinic\u27s transition practice were interviewed. Analysis: The data set consisted of fourteen audio-taped interviews with nineteen key informants, as well as clinic documents that were submitted for review. An a priori coding framework was prepared prior to the initial preliminary analysis based on the study research questions and the interview questions. This initial coding framework was refined using the constant comparative method and subsequent coding discrepancies in the remaining analysis were resolved by consensus. Transcripts and clinic documents were analyzed using content analysis within an ATLAS.ti data management system. Results: Interviews were conducted with 19 staff members (7 social workers, 7 nurse practitioners, 3 physicians, 1 registered nurse, and 1 health educator) from 14 ATN clinics. There was a general consensus from site representatives as they described perceived facilitators of a successful transition and barriers to a successful transition. Descriptions of practice models were provided. Conclusion/Discussion: Two unanticipated findings were the lack of a consensus on the definition of transition and what constitutes a successful transition. Anecdotal evidence seemed to provide a consensus of opinions from the key informants when asked to describe facilitators and barriers to a successful transition. Examples of practice models that were used in several clinics with a structured transition program were described. Ideas for future research were suggested. A definition of health care transition is proposed