An Overview of the SMILE Program: Care Linkage and Engagement for Newly Diagnosed HIV+ Adolescents within Fifteen Adolescent Medicine Clinics in the United States

Introduction: Along with care linkage and engagement, treatment as prevention is being promoted as a core component of the National HIV/AIDS Strategy. The SMILE program investigated the use of outreach workers to help facilitate rapid health care linkage and engagement for newly diagnosed, HIV infected adolescents. The program design required formal partnerships between Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN) clinics and local health departments. A full-time outreach worker provided linkage services and developed relationships with agencies serving HIV+ adolescents. Program evaluation occurred annually after implementation. 

Methods: Data collected during annual site visits at 15 ATN clinics from three primary sources were analyzed: 1) clinical outcomes (e.g., linkage rates) recorded by outreach workers; 2) semi-structured interviews (Baseline n=64, Year 1 n=60, Year 2=59) with staff (e.g., outreach workers, nurses, physicians); and 3) photographs of clinical space. The Institutional Review Boards at the Johns Hopkins Medical Institutions and all ATN sites approved study protocols.

Results: 32 months after program initiation, 1071/1468 (73%) of HIV-infected youth were linked to care, of which 973/1071 (91%) were subsequently engaged in care. Most (89%) were 18-24 years old, male (78%), non-Hispanic Black (73%), and MSM (73%). 44% of youth were referred within one month of HIV test date. Through analysis of the interviews and photographs, we identified a variety of individual (e.g., developmental, mental health), clinical (e.g., youth-friendliness, outreach worker with specific youth skills) and structural (e.g., Public Health Authority for data sharing, broad coalition participation) factors affecting care linkage and engagement. Recommendations for improving retention in care  (e.g., text messaging, medical home) were also identified.

Conclusions: In order for the benefits of treatment innovations, including treatment as prevention, to be realized it is essential to retain HIV+ adolescents in care. Key recommendations from the SMILE program to improve linkage and engagement for HIV+ adolescents include: individually-focused tools that assess readiness for care engagement; provider education and training to improve adolescent-focused services; and the development of models that better integrate screening, testing and care organizations. At the federal level, grantors, including the CDC and NIH, can play an important role in facilitating the collaboration (e.g., data sharing) between clinics, health departments, and community agencies. These approaches will provide a critical foundation to effectively realizing the goals of the National HIV/AIDS Strategy.