Indicators of transition success for youth living with HIV: perspectives of pediatric and adult infectious disease care providers

Abstract

Rates of HIV infection among adolescents in the US continues to rise, resulting in more individuals who must eventually transition from pediatric to adult care. It is critical that this process go smoothly to ensure continuity of care and to maximize patient outcomes. While research has examined youths' experiences with the transition process, disease-specific indicators of successful transition from pediatric to adult care remain undefined. Identifying indicators will facilitate the evaluation of transition processes, and, ultimately, the empirical determination of best practices. Interviews were conducted with 19 professionals who provide care for children and adults with HIV in southeastern state in the US. Approximately half of the providers self-identified as pediatric care providers. Nine of those interviewed were nurses and physicians and 10 were social workers. Providers had been working in the field of HIV for an average of 11.2 years. Interviews were taped, transcribed, and coded for emergent themes. Providers who care for HIV-infected youth identified both behavior and seriologic indicators of succesful transitions. Behavioral indicators identified were keeping appointments, medication adherence, and demonstrating ownership of medical care. Providers also identified serological markers of a succesful transition, specifically,viral load and CD4 count. Findings provided valuable insight into the perspectives of infectious disease care providers on indicators of successful transition from pediatric to adult care for adolescents with HIV. This is an important first step in developing empirical evaluation measures for transition practices and models. Similar research should be conducted with other groups of providers to assess the generalizability of these findings. Additionally, future research should seek to operationalize the identified behavioral indicators and determine appropriate values to indicate success for all indicators.

Key Elements for, and Indicators of, a Successful Transition: An International Delphi Study

“…Defining the key elements of transition programs that lead to better outcomes is needed to design efficient models of care [6]. Moreover, researchers point out that there are no indicators about how to characterize a transition as successful [7,8], and until it is understood how to evaluate this process as successful, it will be difficult to move research priorities forward [8]. Additionally, having indicators available should facilitate the evaluation of transition processes and the empirical determination of best practices [7].…”

Transition from Pediatric to Adult Care for Adolescents and Young Adults with a Disorder of Sex Development

“…14 For example, medical appointment attendance and adherence to medical regimens, as well as serological markers including CD4 and viral load, indicate successful transition for AYAs infected with HIV. 14 Similarly, health care providers working with AYAs with DSD should assess for successful transition using both biological and behavioral markers. These may include, but are not limited to, attending medical appointments, medication adherence, and knowledge of safe sex practices.…”

Caring for ‘underground’ kids: qualitative interviews with clinicians about key issues for young people growing up with perinatally acquired HIV in Australia

“…But the fact that HIV is a profoundly stigmatised infectious disease clearly sets it apart from other chronic childhood conditions (Fair, Sullivan, & Gatto, 2011;. Perinatally infected young people are also seen as different within HIV medicine itself.…”