We (adolescent docs) have been trying to help physicians become comfortable with adolescent healthcare for years, yet the fact remains that many doctors never acquire a level of comfort in dealing with this group and thus choose to turf their care to us regardless of the level of intensity of the problem. With the ever-increasing rate of HIV infections in young people, physicians have to become familiar with taking care of them and implementing age-appropriate services to address all of their needs.
Half of all new HIV infections in the U.S. occur among 13-24 year olds, primarily due to sexual transmission, while AIDS is the sixth leading cause of death for young people 16-24 years old. Sex coupled with homelessness, abuse and other circumstances, especially lack of understanding of the needs of this population, puts them at risk. Adolescents in communities of color, just like adults, are disproportionately represented by this epidemic. Young adolescent women and young men who have sex with men (MSM) are at greatest risk of infection. Since the beginning of the HIV/AIDS epidemic, MSM have consistently been found to have the highest rates of HIV infection in the U.S., while adolescents of color, especially African American adolescents, have shown a steady increase in HIV infection.
The demographics of Chicago's HIV epidemic share this pattern. According to the Chicago Department of Public Health (CDPH), MSM account for over half (52%) of the 20,850 AIDS cases in Chicago, and 43% of the 2,346 newly diagnosed HIV infections. Youth between 13-24 years account for approximately 11% of newly diagnosed HIV infections in Chicago, with young MSM of color leading the numbers of cases (65% are African American and 19% are Latino). In 2001-2002, young MSM accounted for 73% of all recently diagnosed adolescent males in Chicago.
Young women, particularly minority youth, are vulnerable to HIV due to their partners being age discordant. Adolescent females often date men 20 and older, allowing for power inequalities to take place, such as condom negotiation. Many older male partners present a greater HIV risk as well due to the likelihood of having had multiple partners and of not knowing their HIV status. Adolescent females are more biologically vulnerable due to their large cervical ectropion. This is different from prepubescent females and older women.
One thing to keep in mind is that youth face many barriers that may occur at any point in the transitioning and care process (Figure 4). Hurdling those barriers is often more than the adolescent patient can handle alone. A multidisciplinary team can best address these issues along with the adolescent. We know that youth are an important resource in responding to the HIV epidemic and we must therefore assist them to the point of being able to contribute to the process of finding solutions to the problem. It is not possible to treat adolescents unless they are part of the evaluation process, thus enrolling them in clinical trials is a must.
Although most clinical trials have been open to adolescents, they were not focused on adolescents. Enrollment had therefore not been a priority and as a result was poor. In 1994, the Pediatric AIDS Clinical Trials Group (PACTG) (also funded by the National Institute of Child Health and Human Development, or NICHD) developed the Adolescent Medicine HIV/AIDS Research Network to encourage participation by more adolescents in clinical trials. The initiative was formed to plan and conduct research on the medical, biobehavioral and psychological aspects of HIV and AIDS in young people. The network, composed of funds from NIAID, NICHD, NIDA, NIMH and HRSA, entitled its first study Project REACH (Reaching for Excellence in Adolescent Care and Health), in which 16 programs in 13 cities were granted funding, including the present AMaC program with Dr. Lisa Henry-Reid, chairman of the Division of Adolescent and Young Adult Medicine at Stroger Hospital of Cook County (the public hospital of Chicago), as the principal investigator for this site. This was the first large-scale disease progression study of HIV-positive adolescents infected through sexual behavior or injection drug use. Outcomes of the REACH study that looked at recruitment and retention of participants showed that the five most important factors for the participants were:
Items that were deemed least important by participants included social activities, compensation, transportation and food/meals. It was found that both satisfaction with care and adaptive coping were associated with level of depression in HIV-infected adolescents. Another outcome of adolescent-focused research revealed that psychological factors may affect the success of implementing a research study for adolescents, while other research targeting adolescent girls and young women demonstrate special needs for promoting retention and adherence to research. Exposure to violence and potentially traumatic events and mental health issues required special attention. These factors served as potential hindrances to the research. In order to combat these potential downfalls, adolescent females were provided case manager's pager numbers, had arranged taxicabs and bus tokens, and a place to vent and express fears and emotions.
AMaC, under the guidance of Dr. Jaime Martinez, Director of HIV adolescent services for The Division of Adolescent and Young Adult Medicine and an adolescent care provider at Stroger Hospital, is the largest clinical research site for adolescent HIV in the Midwest. Presently, our program is a funded site of the Adolescent Trials Network (ATN). In 2005, we were involved in 11 youth-specific research protocols (ATN 009, 015,021, 022, 023B, 024, 025, 026, 048, 052 and 056), and one community-based research protocol (ATN 016a & b - C2P). Twenty-six youth were newly enrolled in youth-specific research protocols in 2005, with a total of 142 youth enrolled cumulatively for the year (not inclusive of the youth involved in Protocol 16b, which is a community-based research initiative through our C2P program). We retained all but seven youth in these studies. Hence, our retention rate for youth enrolled in clinical trials from AMaC is 95%. In 2005 there were 52 youth educated about and referred to our research projects prior to enrollment.
Clients are informed about research opportunities and the benefits of research during a new client's first or second visit to AMaC. The study coordinators (Research Nurse Practitioners) are introduced to each new patient as working with the primary care team (assigned clinician, psychologist, and case manager). The nurse practitioners, two of whom are ATN study coordinators, educate clients on available research opportunities. We have a video on HIV/AIDS clinical trials that patients can view in our resource room (the teen room). Peer educators who have participated in research are also available to educate the client on research opportunities and answer any questions. In addition, every four to six months, we present all of the clinical trials that our community partners and we conduct to the youth Community Advisory Board (CAB).
All of our patients, including those involved in research protocols, require supportive services. The AMaC clinic offers integrated mental health, case management, nutrition, complementary therapy, and a comprehensive array of medical care services as depicted in Figures 3 and 5. Our wide spectrum of services enables us to meet the supportive needs of patients before, during and after participation in research. In addition, each youth's investment in time and effort to participate in research protocols is respected and adheres to the guidelines established by our Hospital Investigational Review Board (IRB). Thus, they are compensated for their participation in any research protocols, which includes support for transportation, food and babysitting. Respecting and reimbursing youth for their time is the practice of all sites working with the Adolescent Trials Network, as is often the practice in adult research protocols.
Our retention of youth in research for 2005 was 95%. This success in retention is achieved through a multidisciplinary approach where each client is assigned a primary care team. If the client has any healthcare needs outside clinic hours, the research nurse practitioners are available for walk-in visits Monday through Friday. The flexibility of this approach assists in the retention of youth in research protocols. It would be difficult for a patient to enter and be retained in research without these supportive services. We believe that 100% of the patients who have entered research protocols would not have done so without the aforementioned supportive services.
Dr. Margo Bell is an Adolescent Medicine subspecialist and a pediatrician at Stroger Hospital of Cook County and the Ambulatory Care Health Network of Cook County. She is the direct or of Adolescent HIV outreach services and the principal investigator of the CHRRPY (Chicago HIV Risk Reduction Partnership for Youth) program, and the direct or of the LEEP (Living, Eating, Exercising and Problem Solving) program for overweight teens.
The HIV Treatment Series is sponsored in part by an unrestricted grant from Abbott Virology.