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Item Factors affecting linkage to care and engagement in care for newly diagnosed HIV-positive adolescents within fifteen adolescent medicine clinics in the United States(Springer, 2014-08) Philbin, Morgan M.; Tanner, Amanda E.; DuVal, Anna; Ellen, Jonathan M.; Xu, Jiahong; Kapogiannis, Bill; Bethel, Jim; Fortenberry, J. Dennis; Department of Pediatrics, IU School of MedicineEarly linkage to care and engagement in care are critical for initiation of medical interventions. However, over 50 % of newly diagnosed persons do not receive HIV-related care within 6 months of diagnosis. We evaluated a linkage to care and engagement in care initiative for HIV-positive adolescents in 15 U.S.-based clinics. Structural and client-level factors (e.g. demographic and behavioral characteristics, clinic staff and location) were evaluated as predictors of successful linkage and engagement. Within 32 months, 1,172/1,679 (69.8 %) of adolescents were linked to care of which 1,043/1,172 (89 %) were engaged in care. Only 62.1 % (1,043/1,679) of adolescents were linked and engaged in care. Linkage to care failure was attributed to adolescent, provider, and clinic-specific factors. Many adolescents provided incomplete data during the linkage process or failed to attend appointments, both associated with failure to linkage to care. Additional improvements in HIV care will require creative approaches to coordinated data sharing, as well as continued outreach services to support newly diagnosed adolescents.Item HIV Testing, Care Referral, and Linkage to Care Intervals Affect Time to Engagement in Care for Newly Diagnosed HIV-Infected Adolescents in 15 Adolescent Medicine Clinics in the United States(Wolters Kluwer Health, 2016-06-01) Philbin, Morgan M.; Tanner, Amanda E.; DuVal, Anna; Ellen, Jonathan M.; Xu, Jiahong; Kapogiannis, Bill; Bethel, Jim; Fortenberry, J. Dennis; Pediatrics, School of MedicineOBJECTIVE: To examine how the time from HIV testing to care referral and from referral to care linkage influenced time to care engagement for newly diagnosed HIV-infected adolescents. METHODS: We evaluated the Care Initiative, a care linkage and engagement program for HIV-infected adolescents in 15 US clinics. We analyzed client-level factors, provider type, and intervals from HIV testing to care referral and from referral to care linkage as predictors of care engagement. Engagement was defined as a second HIV-related medical visit within 16 weeks of initial HIV-related medical visit (linkage). RESULTS: At 32 months, 2143 youth had been referred. Of these, 866 were linked to care through the Care Initiative within 42 days and thus eligible for study inclusion. Of the linked youth, 90.8% were ultimately engaged in care. Time from HIV testing to referral (eg, ≤7 days versus >365 days) was associated with engagement [adjusted odds ratio = 2.91; 95% confidence interval (CI): 1.43 to 5.94] and shorter time to engagement (adjusted hazard ratio = 1.41; 95% CI: 1.11 to 1.79). Individuals with shorter care referral to linkage intervals (eg, ≤7 days versus 22-42 days) engaged in care faster (adjusted hazard ratio = 2.90; 95% CI: 2.34 to 3.60) and more successfully (adjusted odds ratio = 2.01; 95% CI: 1.04 to 3.89). CONCLUSIONS: These data address a critical piece of the care continuum and can offer suggestions of where and with whom to intervene to best achieve the care engagement goals outlined in the US National HIV/AIDS Strategy. These results may also inform programs and policies that set concrete milestones and strategies for optimal care linkage timing for newly diagnosed adolescents.Item HIV viral load levels and CD4+ cell counts of youth in 14 cities(Wolters Kluwer, 2014) Ellen, Jonathan M.; Kapogiannis, Bill; Fortenberry, J. Dennis; Xu, Jiahong; Willard, Nancy; Duval, Anna; Pace, Jill; Loeb, Jackie; Monte, Dina; Bethel, James; Adolescent Medicine Trials Network for HIV/AIDS Interventions; Pediatrics, School of MedicineObjectives: To describe the HIV viral load and CD4 cell counts of youth (12-24 years) in 14 cities from March 2010 through November 2011. Methods: Baseline HIV viral load and CD4 cell count data were electronically abstracted in a central location and in an anonymous manner through a random computer-generated coding system without any ability to link codes to individual cases. Results: Among 1409 HIV reported cases, 852 participants had data on both viral load and CD4 cell counts. Of these youth, 34% had CD4 cell counts of 350 or less, 27% had cell counts from 351 to 500, and 39% had CD4 cell counts greater than 500. Youth whose transmission risk was male-to-male sexual contact had higher viral loads compared with youth whose transmission risk was perinatal or heterosexual contact. Greater than 30% of those who reported male-to-male sexual contact had viral loads greater than 50 000 copies, whereas less than 20% of heterosexual contact youth had viral loads greater than 50 000 copies. There were no differences noted in viral load by type of testing site. Conclusion: Most HIV-infected youth have CD4 cell counts and viral load levels associated with high rates of sexual transmission. Untreated, these youth may directly contribute to high rates of ongoing transmission. It is essential that any public health test and treat strategy place a strong emphasis on youth, particularly young MSM.Item Linking HIV+ adolescents into care: The effects of relationships between local health departments and adolescent medicine clinics(Taylor & Francis, 2013) Tanner, Amanda E.; Philbin, Morgan M.; Ott, Mary A.; DuVal, Anna; Ellen, Jonathan; Kapogiannis, Bill; Fortenberry, J. Dennis; The Adolescent Trials Network for HIV/AIDS Interventions; Pediatrics, School of MedicineBackground: The fragmentation of HIV-related diagnostic and treatment services, especially for youth, is a significant barrier for transitioning to care. The study identified key elements that affected care linkage efforts. Methods: We conducted 64 interviews across 15 clinical sites. The constant comparative method was used. Results: Primary linkage to care processes are illustrated through three geographically diverse case studies. Factors included: inter-agency relationships, data sharing protocols, and service duplication concerns. Program improvement strategies were discussed. Conclusions: A strong, citywide network is helpful in coordinating care linkage services. These partnerships will be critical in effectively realizing the goals of the National HIV/AIDS.Item Linking HIV-positive adolescents to care in 15 different clinics across the United States: Creating solutions to address structural barriers for linkage to care(Taylor & Francis, 2014) Philbin, Morgan M.; Tanner, Amanda E.; DuVal, Anna; Ellen, Jonathan; Kapogiannis, Bill; Fortenberry, J. Dennis; Pediatrics, School of MedicineLinkage to care is a critical corollary to expanded HIV testing, but many adolescents are not successfully linked to care, in part due to fragmented care systems. Through a collaboration of the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC) and the Adolescent Trials Network (ATN), a linkage to care outreach worker was provided to ATN clinics. Factors related to linkage were explored to better understand how to improve retention rates and health outcomes for HIV-positive adolescents. We conducted 124 interviews with staff at 15 Adolescent Trials Network clinics to better understand linkage to care processes, barriers, and facilitators. Content analysis was conducted focusing on structural barriers to care and potential solutions, specifically at the macro-, meso-, and micro-levels. Macro-level barriers included navigating health insurance policies, transportation to appointments, and ease of collecting and sharing client-level contact information between testing agencies, local health departments and clinics; meso-level barriers included lack of youth friendliness within clinic space and staff, and duplication of linkage services; micro-level barriers included adolescents' readiness for care and adolescent developmental capacity. Staff initiated solutions included providing transportation for appointments and funding clinic visits and tests with a range of grants and clinic funds while waiting for insurance approval. However, such solutions were often ad hoc and partial, using micro-level solutions to address macro-level barriers. Comprehensive initiatives to improve linkage to care are needed to address barriers to HIV-care for adolescents, whose unique developmental needs make accessing care particularly challenging. Matching the level of structural solution to the level of structural barriers (i.e., macro-level with macro-level), such as creating policy to address needed youth healthcare entitlements versus covering uninsured patients with clinic funds is imperative to achieving the goal of increasing linkage to care rates for newly diagnosed adolescents.Item Moral conflict and competing duties in the initiation of a biomedical HIV prevention trial with minor adolescents.(2016-10-21) Knopf, Amelia; Gilbert, Amy; Zimet, Gregory; Kapogiannis, Bill; Hosek, Sybil; Fortenberry, J. Dennis; Ott, Mary A.; The Adolescent Medicine Trials Network for HIV/AIDS InterventionsBackground: Biomedical HIV prevention research with minors is complicated by the requirement of parental consent, which may disclose sensitive information to parents. We examine the experience of principal investigators (PIs) and study personnel who faced this complex ethical issue in the first biomedical HIV prevention study that allowed minors to self-consent for enrollment. Methods: We conducted in-depth interviews with PIs and study personnel from 13 medical trial sites in cities across the United States. Data were analyzed using a conventional content analysis. Results: Participants experienced moral conflict as they struggled to fulfill conflicting duties in this trial involving minor adolescents with multiple vulnerabilities. Our participants experienced conflict between the two types of duties—protective and scientific—previously identified by Merritt. Protective duties were owed to the child, the parents, and the institution, and participants expressed tension between the actions that would protect these subgroups and the actions necessary to fulfill their scientific duties. Conclusions: Moral conflict was resolved in a variety of ways, including reflecting on the protocol's alignment with federal regulations, modifying consent language, considering each individual for enrollment carefully, and accepting institutional review board (IRB) decisions. Potential solutions for future studies are discussed, and include flexible protocol consent procedures and centralized IRB reviews.Item Qualitative Study on the Acceptability of and Adherence to a Vaginal Ring for HIV Prophylaxis Among Adolescent Girls(Wolters Kluwer, 2021) Baker, Zoë; Javanbakht, Marjan; Moore, Janell; Brosnan, Hannah; Squires, Kathleen; Bunge, Katherine; Zimet, Gregory; Mensch, Barbara; Soto-Torres, Lydia; Kapogiannis, Bill; Levy, Lisa; Hoesley, Craig; Reirden, Daniel; Gaur, Aditya; Mayer, Kenneth; Futterman, Donna; Gorbach, Pamina; Pediatrics, School of MedicineObjective: This study aims to assess the product-related, relationship-related, and sex-related factors that act as facilitators and barriers to the acceptability of a vaginal ring (VR) for HIV prevention among adolescent girls. Design: Qualitative study. Methods: Ninety-six girls aged 15-17 years from 6 urban US sites were enrolled in MTN-023/IPM 030, a 24-week randomized controlled trial, for assessing the safety and acceptability of a dapivirine VR for HIV prevention. At week 24, 21 girls were randomly selected to participate in in-depth interviews. Interviews were transcribed verbatim and data analyzed using a thematic analysis approach. Facilitators and barriers to VR acceptability related to participants' relationships, sexual activity, and characteristics of the VR product were identified. Results: Factors related to relationships rarely seemed to act as barriers to VR acceptability; most participants disclosed VR use to sexual partners, and positive reactions from sexual partners, which were common, seemed to facilitate VR acceptability. Emotional and/or physical discomfort surrounding VR use during sex was mentioned occasionally as a barrier to VR acceptability. Product characteristics were most frequently mentioned as barriers to VR acceptability. Many participants reported concerns about the large size of the VR on first impression. Although most found the VR comfortable, some reported pain with VR insertion. Several participants were concerned about VR cleanliness, particularly during menstruation. Conclusion: Product considerations, specifically size and use during menstruation, were the most commonly reported barriers to VR acceptability in this study. Adolescent girls may require additional counseling to assuage product concerns regarding a VR for HIV prevention.Item Transitioning HIV-Positive Adolescents to Adult Care: Lessons Learned From Twelve Adolescent Medicine Clinics(Elsevier, 2016-09) Tanner, Amanda E.; Philbin, Morgan M.; DuVal, Anna; Ellen, Jonathan; Kapogiannis, Bill; Fortenberry, J. Dennis; Department of Pediatrics, IU School of MedicineTo maximize positive health outcomes for youth with HIV as they transition from youth to adult care, clinical staff need strategies and protocols to help youth maintain clinic engagement and medication adherence. Accordingly, this paper describe transition processes across twelve clinics within the Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN) to provide lessons learned and inform the development of transition protocols to improve health outcomes as youth shift from adolescent to adult HIV care. DESIGN AND METHODS: During a large multi-method Care Initiative program evaluation, three annual visits were completed at each site from 2010-2012 and conducted 174 semi-structured interviews with clinical and program staff (baseline n=64, year 1 n=56, year 2=54). RESULTS: The results underscore the value of adhering to recent American Academy of Pediatrics (AAP) transition recommendations, including: developing formal transition protocols, preparing youth for transition, facilitating youth's connection to the adult clinic, and identifying necessary strategies for transition evaluation. CONCLUSIONS: Transitioning youth with HIV involves targeting individual-, provider-, and system-level factors. Acknowledging and addressing key barriers is essential for developing streamlined, comprehensive, and context-specific transition protocols. PRACTICE IMPLICATIONS: Adolescent and adult clinic involvement in transition is essential to reduce service fragmentation, provide coordinated and continuous care, and support individual and community level health.Item Understanding Care Linkage and Engagement Across 15 Adolescent Clinics: Provider Perspectives and Implications for Newly HIV-Infected Youth(International Society for AIDS Education, 2017-04) Philbin, Morgan M.; Tanner, Amanda E.; DuVal, Anna; Ellen, Jonathan M.; Kapogiannis, Bill; Fortenberry, J. Dennis; Pediatrics, School of MedicineThe National HIV/AIDS Strategy emphasizes rapid care linkage and engagement for HIV-infected individuals, though many adolescents are never tested, delay entering care, and frequently drop out. We conducted 183 staff interviews at 15 adolescent medicine clinics (baseline, n = 64; Year 1, n = 60; Year 2, = 59). We used a constant comparative thematic method to examine how providers approached and discussed care linkage/engagement. Qualitative analyses revealed differences in providers' conceptualizations of linkage and engagement. Providers saw linkage as mechanistic and health system driven. It was defined by number of clinic visits and involved relatively little youth agency. In contrast, providers defined engagement by youths' responsibility and participation in their own care. Linkage and engagement are related but distinct aspects of care that require different resources and levels of staff involvement. Integrating an understanding of these differences into future interventions will allow clinic staff to help youth improve long-term health outcomes.Item “Youth friendly” clinics: Considerations for linking and engaging HIV-infected adolescents into care(Taylor & Francis, 2014) Tanner, Amanda E.; Philbin, Morgan M.; Duval, Anna; Ellen, Jonathan; Kapogiannis, Bill; Fortenberry, J. Dennis; The Adolescent Trials Network for HIV/AIDS Interventions; Pediatrics, School of MedicineLinkage and engagement in care are critical corollaries to the health of HIV-infected adolescents. The adolescent HIV epidemic and adolescents’ unique barriers to care necessitates innovation in the provision of care, including the consideration of the clinical experience. Little research has addressed how “youth friendly” clinics may influence care retention for HIV-infected youth. We conducted 124 interviews with providers, outreach workers, and case managers, at 15 Adolescent Medicine Trials Network clinics. Photographs of each clinic documented the characteristics of the physical space. Constant comparison and content and visual narrative methods were utilized for data analysis. Three elements of youth friendliness were identified for clinics serving HIV-infected youth, including: (1) role of target population (e.g., pediatric, adolescent, HIV); (2) clinics’ physical environment; and (3) clinics’ social environment. Working to create ‘youth friendly’ clinics through changes in physical (e.g., space, entertainment, and educational materials) and social (e.g., staff training related to development, gender, sexual orientation) environments may help reduce HIV-infected adolescents’ unique barriers to care engagement. The integration of clinic design and staff training within the organization of a clinical program is helpful in meeting the specialized needs of HIV-infected youth.