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Treatment Issues for HIV-Positive Adolescents
This article is the second in a two-part series about adolescents (youth aged 13 to 21 years) and HIV infection. Part one reviewed adolescent susceptibility to HIV infection, epidemiology, and outreach and made recommendations for HIV counseling and testing. Part two will highlight the unique clinical challenges posed by HIV-infected adolescents as a result of their physical and psychosocial development. Two key challenges face the provider working with HIV-positive youth: helping them adjust to their HIV status and helping them to successfully take life-prolonging medications.
The Course of Adolescent HIV Disease
Although it appears that the clinical course of HIV infection for most adolescents follows that seen in adults, it may have distinctive features compared with the course for adults and children. The REACH study (Reaching for Excellence in Adolescent Care and Health),1 the first prospective biomedical cohort study of adolescents, will provide more definitive information on the clinical course of adolescents with sexually or injection-acquired HIV infection. Open for enrollment in 1996, REACH has recruited 300 HIV-positive and 150 HIV-negative adolescents aged 12 to 19 years and will examine unique features of adolescent HIV disease progression and manifestations, effects on pubertal changes, the interaction of HIV and sexually transmitted diseases, and social and mental health correlates of disease progression in adolescents. Implemented by the Adolescent Medicine HIV/AIDS Research Network (AMHARN), this study is taking place in 13 U.S. cities and is supported by the National Institutes of Health and the Health Resources and Services Administration. Initial findings indicate that because of residual thymic tissue, adolescents may have a greater potential for immune reconstitution.2 This provides a compelling rationale for treating adolescents early and effectively. However, implementing such treatment is complicated by the difficulties of achieving adherence in this age group.
Descriptive studies of HIV+ adolescents demonstrate that clinical status varies by transmission category (Table 1). The majority of youth have acquired their infection sexually during adolescence and enter care asymptomatic but with moderate immune dysfunction (median CD4 count: 410 cells/mm3).3,4 In contrast, perinatally infected children who survive into adolescence usually have advanced disease, with 63% having AIDS, but 20% having CD4 >500/mm3. Their clinical course reflects long-term infection and may not follow the course of HIV infection in adults.5 There are anecdotal reports of a newly emerging group of congenitally infected adolescents who are first being diagnosed in adolescence. This highlights the importance of offering HIV testing to all children of HIV-positive parents.6
The Psychological Challenges of HIV Illness for Adolescents
An understanding of adolescent development is crucial to engaging adolescents in treatment. In addition to the physical changes of puberty, adolescence presents a series of cognitive and psychosocial developmental tasks. The Montefiore Adolescent AIDS Program has identified four key issues for HIV-positive adolescents in coping with their changing health status:7
1. Receiving an HIV diagnosis
2. Disclosing HIV status to parents, partner, and others
3. Coping with HIV illness
4. Preparing for death
In addition, throughout their illness, adolescents must make decisions about their readiness and ability to take antiretroviral medications.
Receiving the Diagnosis
When delivering an HIV diagnosis to a young person, it is necessary to instill hope and provide support in learning to live with HIV. A positive diagnosis adds even more turbulence to the process of integrating sexuality into self-identity. Asymptomatic youth who are still concrete thinkers may have difficulty accepting the diagnosis because of difficulty in understanding and believing the concepts of disease latency and asymptomatic infection. On the positive side, an HIV diagnosis may be a powerful motivator for a young person to make helpful life changes. In general, adolescents must learn to strike a healthy balance between denial of HIV and preoccupation with it. The Montefiore program has found individual and peer group interventions with psychologists and social workers effective in facilitating this adjustment. Some youth may need psychotropic medications for preexisting psychiatric problems or newly occurring symptoms such as anxiety and depression.
Disclosing Status to Others
The next hurdle confronting the HIV-positive teenager is whom to tell and when. Although involving a supportive parent is ideal, many adolescents do not have such support or fear hurting or losing the love of their parents. The need to rely on adults because of illness is also often in sharp contrast to the developmental need to establish independence and identify with a peer group. For gay or substance-abusing youth, disclosure to parents is especially threatening as they may have to reveal their HIV status, sexuality, and/or drug use at the same time.8 The result may be rejection, harassment, or violence.
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Disclosure usually cannot be avoided, because it is difficult to conceal a complex antiretroviral regimen from the people with whom one lives. Adolescence is one of the most "observed" times of life. Adolescents yearn for privacy but often have little space to call their own. Privacy is especially compromised for adolescents living in crowded homes or residential programs and during the school day, institutional bathrooms may make finding a private moment to take medications difficult.
Youth in earlier stages of sexual behavior have fewer partners than adults, thus partner notification may more easily compromise confidentiality. Also, adolescents greatly fear that they will be rejected by their sexual partner if they disclose. Disclosure and partner notification should be a well-thought-out process. Providers can help the adolescent to play out the scenario and offer to participate in disclosure.
Coping with HIV Illness
Adolescents need help interpreting reports of viral load and CD4 cell counts and how they relate to the course of their HIV disease. Because many adolescents think concretely, changes in laboratory values may cause panic. They often need help in understanding that viral load and CD4 cell counts vary widely, and that they can still lead satisfying, productive lives even when their counts change significantly.
Becoming Symptomatic
The anxiety provoked by the presence of HIV-related symptoms may pierce denial for youth who may have only superficially internalized that they are infected. Symptoms may increase some youth's determination to fight HIV, and may decrease others' motivation to live. When symptoms occur, it is important to explore their meaning, correct misconceptions about their significance, and ensure that adequate services and supports are in place.
Preparing for Death
Many adolescents have naïve notions about death and dying and often avoid the topic entirely. When and if this is clinically relevant, providers can help them to explore their beliefs by discussing options for dying in the hospital or at home and funeral or memorial services. Adolescent parents should be counseled on child custody or permanency planning. Introducing the topics of living wills and health care proxies is a practical way to initiate this discussion while a youth is still healthy. This will help him or her organize thoughts and begin to deal with these difficult issues. Eventually, discussions should turn to resolving relationships with family, close friends, and others.
Other Psychosocial Issues
Mental Illness and Substance Use
Mental illness and substance abuse are important comorbidities for HIV-positive adolescents, and failure to identify and address these issues will prevent adolescents from successfully coping with their illness or adhering to antiretroviral treatment. Case studies indicate a high prevalence of depression, bipolar disorder, and anxiety among HIV-positive youth, often predating their diagnosis.9 In the REACH study, 14% percent of females and over 25% of males reported drinking alcohol during the past three months; 7% of females and 20% of males reported using hard drugs during the same period.1 Substance abuse treatment and mental health care are integral components of comprehensive care.
Legal Issues
Providers should be familiar with the legal rights of adolescents to obtain health care in their state. In many states adolescents have a statutory right to consent to health care for sensitive issues such as sexually transmitted diseases (STD), substance use, and mental health care. Access to HIV testing and treatment are frequently guided by local STD laws. These protections are provided because without them, adolescents might avoid needed care.10 Additionally, providers should know their local child protection service regulations for reporting neglect and abuse, because these often figure in the lives of HIV-positive youth. A high prevalence of childhood sexual abuse has also been reported; in one New York City cohort, 30% of males and 35% of females reported sexual abuse as a minor.3
Providing Adolescent-Centered Care
Adolescents prefer health care settings that are oriented to their age group and providers who are attuned to their needs. The state of the art for adolescent care is the "one-stop shopping" model of multidisciplinary care, which integrates primary care with HIV-specific care, mental health services, and case management.7,11 Since many programs are not able to create a special adolescent service, it may be possible to create a provider team that understands and wants to work with adolescents. Providing flexible appointments that do not conflict with school or work, paying attention to payment barriers, and being able to accommodate walk-ins (youth often do not plan ahead) will make it easier for adolescents to take advantage of health services.
Special Considerations in Routine Health Care
Although adolescents may present as sexually active and mature, they are often modest and anxious about bodily changes and have a poor understanding of their anatomies. Providers should ensure privacy throughout the physical examination. Examinations should follow the guidelines for adults, with the addition of assessing stage of puberty with the Tanner staging system (which characterizes development of breasts, genitalia, and pubic hair). The Tanner rating is helpful in interpreting blood values and determining appropriate drug doses.
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Baseline laboratory tests should be performed, as for adults. It is important to reconfirm positive results based on anecdotal evidence of youth who are not HIV+ presenting for HIV-related care. The high prevalence of sexually transmitted infections in this age group mandates routine screening for human papilloma virus, chlamydia, gonorrhea, syphilis, herpes simplex virus, and hepatitis B;1,2,12 see Table 2 for recommended tests. Tuberculosis (TB) screening should be performed according to guidelines for HIV-positive adults. Utilizing community-based resources such as a mobile medical van, school-based clinic, or youth recreation center can increase the completion rate for TB skin testing.13 HIV-positive adolescents need more immunizations than do HIV-positive adults; Table 3 lists appropriate vaccinations. (Although contacts should receive it, varicella-zoster vaccine is not currently recommended for any HIV-positive persons.) Because influenza and tetanus immunizations transiently increase viral load, they should be scheduled on the same day as viral load measurements, or after.
HIV Treatment for Adolescents
Current HIV treatment recommendations for postpubertal adolescents follow adult guidelines However, since adolescents have not been extensively studied in the clinical trial system, few direct data exist. An evaluation of barriers to enrollment revealed a small number of clinically relevant protocols within the Pediatric and Adult ACTG and confirmed that many adolescents perceived the clinical trials to be too burdensome and complex.14 An initiative is now underway within the ACTG to develop adolescent-relevant trials.
Differences in Drug Dosing
The pharmacokinetics of some medications change during adolescence (especially for hepatic enzyme inducers/inhibitors and protein-bound medications). No clinical impact has been noted for the nucleoside analogues, to date. Less information is available for nonnucleoside reverse transcriptase inhibitors and protease inhibitors. Because of the concern that pubertal changes may affect pharmacokinetics, dosing is based on the Tanner puberty stage and not age. Pediatric dosing should be used for adolescents who have entered puberty or are early in puberty (Tanner stage I/II). Dosing for adolescents who are in the middle of puberty (Tanner stage III/IV) should be based on whether they have completed their growth spurt. Adolescents who have completed puberty (Tanner stage V) should be given adult doses.
Relevant Drug Interactions
Antiretroviral agents have significant interactions with several key medications commonly prescribed for adolescent patients. For instance, ritonavir (and possibly indinavir) has been shown to increase levels of clarithromycin and metronidazole (used for bacterial vaginosis and trichomoniasis), and possibly azithromycin (used for uncomplicated cervicitis or urethritis). Ritonavir (and possibly nevirapine) also decreases estradiol levels and thus may reduce the efficacy of combined oral contraceptive pills (OCPs). (Patients may be switched to progestin-only OCPs, injectable Depoprovera, or Norplant.) Conversely, indinavir combined with Orthonovum 1/35 has been shown to increase estradiol levels by about 25%. Finally, ritonavir (and possibly indinavir) increases levels of the tricyclic and serotonin reuptake inhibitor antidepressants (e.g., fluoxetine), increasing the possibility of toxicity.
Improving Medication Adherence
Like their adult counterparts, HIV-positive adolescents face challenges in adhering to both antiretroviral and PCP prophylaxis regimens. In a Los Angeles program for HIV-positive adolescents, the most common reasons reported for missing medications were side effects, the inconvenience of taking so many pills, forgetfulness, and having medications continually reinforce the reality of being HIV infected.15 Adherence seems to vary with route of HIV infection: In one study, among adolescents with CD4 counts below 200 cells/mm3, more than 90% of those infected perinatally or via blood products reported taking PCP prophylaxis, compared to only half of those with sexually acquired infection.4
The Montefiore program has developed a multifaceted approach to facilitating medication adherence among youth (Table 4). As with any successful work with adolescents, the first step in adherence is establishing a therapeutic alliance between adolescent and provider in the context of providing comprehensive care. To specifically address medication adherence in adolescents, AMHARN has designed a multilevel adherence initiative: Project TREAT (Treatment Regimens Enhancing Adherence in Teens).16 Based on Prochaska and DiClemente's Transtheoretical Model of Change, Project TREAT recognizes that each adolescent is at a unique stage in terms of treatment readiness. This model proposes a series of cyclical stages through which behavior change occurs (precontemplation, contemplation, preparation, action, and maintenance) and includes relapse as a predictable part of behavior change. Project TREAT has developed specific interventions and materials (video- and audiotapes and booklets) for each stage, to move adolescents toward successful treatment adherence. This model was chosen because it incorporates the developmental challenges of adolescents and starts with the perspective of each adolescent.
To take medications effectively, adolescents must learn to integrate them into their daily routine. Practice regimens are used in recognition of youth's developmental learning stage (i.e., trial and error) and involve rehearsing the medication regimen with vitamins. This allows the adolescent to acclimate to treatment and problem-solve about reasons for nonadherence, without risking underdosing. Ideally, adolescents are placed on a twice-daily medication regimen. Many providers also begin with a protease-sparing regimen, given the difficulty of achieving excellent adherence with the first course of medication and the risk of mutations causing cross-resistance among protease inhibitors.
Transitioning to Adolescent or Adult Services
As medical care continues to improve, a considerable number of HIV-positive adolescents will be healthy enough to "graduate" from adolescent to adult care programs. Youth who are transitioning from pediatric to adolescent programs will require programs that address their developmental needs and help them cope with the challenges of health care maintenance, medication adherence, and illness in the context of emerging sexuality and independence. Although the concept of transition from pediatric and adolescent to adult health care settings has been described in the literature for other chronic illnesses,17 little has been written about facilitating the transition for HIV-positive adolescents.11 At the Montefiore Adolescent AIDS Program, we have found that young people are quite reluctant to leave familiar providers. However, preparation over time and "hand over" models that introduce the new provider in the familiar clinic setting and maintain ongoing contact and support can help with this transition.
Conclusion
Developmental and social issues make caring for HIV-positive adolescents unique and challenging. With the availability of more effective and simpler antiretroviral regimens, the provider has a responsibility to create programs that can engage adolescents as participants in a full array of treatment services.
— Neal D. Hoffman, MD, Donna Futterman, MD, and Alice Myerson, MSN, CPNP
Dr. Hoffman is Medical Director of the Adolescent AIDS Program of Montefiore Medical Center and Assistant Professor of Pediatrics at Albert Einstein. Dr. Futterman is Director of the Montefiore Adolescent AIDS Program and Associate Professor of Pediatrics at Albert Einstein. Ms. Myerson is Primary Care Coordinator for the Montefiore Adolescent AIDS Program.
Published in Journal Watch HIV/AIDS Clinical Care March 1, 1999
Citation(s):
1. Rogers AS et al. The REACH Project of the Adolescent Medicine HIV/AIDS Research Network: Design, methods, and selected characteristics of participants. J Adolesc Health 1998 22 300-311.
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2. Douglas, AMHARN, unpublished data. .
3. Futterman D et al. Human immunodeficiency virus-infected adolescents: The first 50 patients in a New York City program. Pediatrics 1993 91 730-735.
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4. Rogers AS et al. A profile of human immunodeficiency virus-infected adolescents receiving health care services at selected sites in the United States. J Adolesc Health 1996 19 401-408.
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5. Grubman S et al. Older children and adolescents living with perinatally acquired HIV. Pediatrics 1995 95 657-663.
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6. American Academy of Pediatrics, Committee on Pediatric AIDS. Disclosure of illness status to children and adolescent with HIV infection. Pediatrics 1999 103 164-166.
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7. Kunins H et al. Guide to adolescent HIV/AIDS program development. J Adolesc Health 1993 14 36S-52S-36S-52S.
8. Ryan C and Futterman D. Lesbian and gay youth: Care and counseling. New York: Columbia University Press 1998 .
9. Henderson R et al. A survey of the mental health care needs of HIV+ adolescents and young adults. 12th World AIDS Conference, Geneva, Switzerland 1998 Jun abstract 24230 .
10. Cheng TL et al. Confidentiality in health care: A survey of knowledge, perceptions, and attitudes among high school students. JAMA 1993 269 1404-1407.
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11. Woods ER. Overview of the Special Projects of National Significance Program's 10 models of adolescent HIV care. J Adolesc Health 1998 23 2 Suppl 5-10.
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12. Hoffman ND et al. Response to Hepatitis B virus vaccination among a cohort of HIV+ youth. 11th International Conference on AIDS, Vancouver, British Columbia 1996 Jul abstract ThB.4169 .
13. Hoffman ND et al. TB infection in HIV-positive adolescents: A NYC cohort. Pediatrics 1996 87 198-203.
14. D'Angelo J et al. Can HIV infected adolescents be successfully enrolled in clinical trials? The ACTG Protocol 220 experience. J Adolesc Health 1996 18 115-115.
15. Belzer M et al. Antiretroviral adherence issues among HIV+ youth. J Adolesc Health 1998 22 160-160.
16. Schietinger H et al. Helping Adolescents with HIV adhere to HAART (in development) AMHARN, Washington DC 1999 .
17. Blum RW et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. J Adolesc Health 1993 14 570-576.
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