As I was leaving the stigma workshop sponsored by the National Minority AIDS Council in St. Louis in May, it was obvious that we physicians don't perceive ourselves the way others perceive us. Enlightened by a group of non-physicians about why patients don't feel comfortable talking to many physicians and how we perpetuate some of the stigma associated with HIV care, I was reminded of the recurrent theme that occurs in adolescent healthcare.
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.
Statistics from the Youth Risk Behavior Survey (YRBS) conducted on 15,000 students in the United States in 2003 revealed that more than 60% of high school students have had a sexual encounter by their senior year, while condom use declines from ninth to 12th grade. A consistent theme exists in that youth today don't seem to think they are at risk of sexually transmissible infections (STIs) any more than they did in years past. Of the approximate 12 million new cases of STIs reported each year in the U.S., two-thirds occur in adolescents and young adults less than 25 years of age. Pus-producing and ulcerative STIs increase the risk of HIV transmission by four and nine times, respectively.
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 minority men who have sex with men (YMMSM) face multiple social difficulties in dealing with being both minority members and MSM within cultures that marginalize both groups. Various mental health and emotional challenges disproportionately affect MSM, which may lead to developing inappropriate coping skills and detrimental behaviors. These behaviors include the abuse of both disinhibiting and/or intravenous (IV) drugs; dropping out of high school; and high rates of depression and suicide. YMSM have consistently reported engaging in high-risk behaviors, including drug use (58%), chemical dependency (17%), and suicide attempts (43%), all behaviors that put youth at exceptionally high risk for HIV transmission. Seventeen percent (17%) of young gay men report having engaged in prostitution, and 45% have a history of STIs. High levels of ignorance of how STIs are transmitted, in part due to the unwillingness of YMSM to talk to their families, health providers, or partners about issues of sexual health, also contribute to growing infection rates.
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.
Stages of Development
In order to understand the entities required to provide healthcare to adolescents, one must first understand their developmental tasks, as depicted in Figure 1. Adolescence can be a time of intense change. Adolescents transition from being concrete thinkers to becoming abstract thinkers (Figure 2) along a continuum. In the Early stage, independence-dependence struggles are heralded by rapid physical changes with the onset of puberty. The Middle stage is characterized by an increased scope of feelings, and increased importance of peer group values and more risk-taking behaviors. The Late stage represents emerging adults who have successfully transitioned into accepting responsibility for their behaviors. If their developmental task is interrupted (by things such as problems in the home, dropping out of school, substance use, or acquiring a chronic illness), that continuum is arrested or delayed, and they may never complete their developmental tasks or may have extreme difficulty in completing their tasks. The healthcare provider plays a vital role in helping the adolescent complete their developmental tasks, especially in the face of chronic illnesses. An understanding of this developmental pattern, though it may not be exactly the same in every adolescent, helps the healthcare provider evaluate an adolescent's behavior as it applies to their health.
Figure 1. Tasks of Adolescent Development
Figure 2. Stages of Adolescent Development
A Model of Services
In our Adolescent Medicine at Core (AMaC) program, a program primarily geared towards the care of HIV-positive adolescents and young adults, we employ the following principles of healthcare (See Figure 3).
Youth require adolescent-specific HIV services. Service-system models must be adolescent specific and developmentally appropriate, taking into account youth's maturational processes both biologically and physically.
Youth need support during engaging and stabilization. The basic needs of youth for food, housing and clothing must be met before medical care for HIV or any other issue can be effective.
Services must be comprehensive, seamless and integrated. Case finding involves outreach, HIV CT (counseling and testing), and transition into care. Secondly, on-site (one-stop shopping) clinic services, medical primary care, mental health assessment and treatment, access to youth-friendly substance services, access to research, and case management. These services are linked so that there is the accurate perception of providers working together within one program, with each other and with the consumer.
Youth must be supported as they transition into care. Actively link identified HIV-infected youth at outreach sites in the community to clinics and offer case management services.
Figure 3. Entities Involved in the Transitioning Process Into Healthcare
Often after initial diagnosis of HIV, adolescents may not enter care for many months. Although parental involvement in HIV healthcare is a desirable goal, it is not mandatory and therefore consent by the adolescent is sufficient to provide evaluation and treatment for HIV infection. YMSM face being displaced from their home if they disclose their status, which they feel may out their sexuality as well.
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.
Figure 4. Barriers to Primary Healthcare
Initially, little definitive research was conducted with HIV-positive adolescents. Barriers to research don't start at the research level but are present at different stages of transition, starting with HIV counseling and testing, with the stigma of getting tested as a major factor, identifying youth-friendly testing sites and overcoming stigma associated with HIV, such as fear of the life-threatening implications of an HIV diagnosis. In addition, many adolescents are inexperienced in manipulating the healthcare system and may not trust healthcare professionals. Young MSM are a population that encounters significant barriers due to homophobia.
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:
quality medical care,
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.
Figure 5. Primary Care Team Structure of the AMaC Clinic
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.
Providing care to adolescents is a multifaceted process in that no two adolescents are the same, but they all require sensitive, flexible, culturally and developmentally appropriate care. Identifying and transitioning HIV-positive adolescents into care requires a team approach to be successful, including the time and willingness of the provider to become a part of the process. Ultimately, adolescents should be encouraged to participate in research protocols that will help to minimize the virus in this population just as it has become minimally existent in the pediatric population. In order to increase prevention of HIV in the adolescent population, behavioral research must be escalated beyond its present point. At every avenue that means acknowledging that adolescents are sexually active and need to be easily included in research that is pertinent to addressing this issue. Clinical research should continue to be encouraged in order to determine means by which we are able to decrease the detrimental effects of the virus to youth, including decreasing viral load and increasing CD4 counts. In reality, however, clinical research cannot be conducted without understanding what makes it successful ... and that means understanding adolescent behavior.
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.