JOURNAL
HIV/AIDS
As HlV infection becomes more widespread among adolescents, health-care providers who-are currently caring for adolescents will increasinglyneed to offer HIV-specific treatment. Providers who currently care for HIV-infected adults and/or children may want to expand their practice to include adolescents. This module discusses protocols and strategies used to care for HIV-infected adolescents who are asymptomatic as well as those who are symptomatic. These guidelines promote expansion of services to include early intervention for HIV-positive adolescents.
1993;14:36S525
most HIV/AIDS care. As the epidemic continues to spread, more practitioners are needed to do this work.
OBJECTIVES Understand elements of age specific adolescent-oriented HIV medical care including: * Clinical care settings * Staging, evaluation, and assessment of disease progression * Appropriate medications Identify stages of HIV infection Develop plan for HIV-related prophylaxis, treatment, and medical follow-up Identify adolescent-specific antiviral and prophylactic treatments for HIV Develop compliance strategies with patients for treatment regimens CLINICAL SETTINGS AND COMPONENTS OF CARE The epidemicwas initiallyconcentratedin a few geographicareas, which thus provided 365 1054-l39xllm&wo
HEALTH
MODULE THRE MEDICAL MANA
INTRODUCTION
I.
OF ADOLESCENT
hbkhd
by Wevier science I’dGhing
The Settings Locations currently caring for adolescents or HIV-infected people in other age groups are likely candidates for the provision of care to HIV-infected adolescents. However, they will need to: * Expand pre-existing adolescent or family practice services * Expand sites organized to treat HIVinfected children and/or adults * Establish specific regional programs for adolescents with HIV infection and/or high-risk behaviors o For Clinicians Who Usually Treat Children Caring for adolescents requires different approaches and resources. Unlike young children, adolescents have a greater sense of privacy about their bodies and medical histories. Clinicians need to provide them with gowns, allow them to change in a private space, and use drapes during genital and pelvic exams. The practitioner may initially feel uncomfortable discussing sexuality and genital parts during the exam. Adolescents are entitled to confidentiality about their medical histories, and providers must respect their wishes, 0 sociely forAdolescent Medicine, 1993
Co., Inc., 655 Avenue of the Americas, New York, NY 1~10
HIV/AIDS MEDICAL MANAGEMENT
Table 1.Elements of Primary Care of HIV-Infected Adolescents 0 Risk assessment * Risk reduction l HIV testing and counseling l Staging of HIV infection l Appropriate immunizations l Routine gynecologic care * Treatment of HIV fantivirals, immune boosters) l Prophylaxis against opportunistic infections l Early diagnosis of opportunistic infections l Provision of education and emotional support l Coordination of care (psychosocial and specialists) l Referrals for legal, psychological, and other appropriate services From Endnote 2
even if they contradict the desires of a parent or guardian. If appropriate, however, the practitioner may counsel the adolescent patient to share her/his with relevant medical information family members or any other supportive adults.
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elated At the Adolescent Aids Program (AAP), our multidisciplinary staff provides primary care and HIV-specific care for HJVinfected adolescents (see Table 1). We consult with specialists, such as gynecologists, infectious disease specialists, pulmonary specialists, gastroenterologists, dermatologists, opthalmologists, and psychiatrists, when needed. However, the “one-stop shopping“ model is used; meaning that the professionals come to one place where the teenagers are, rather than parceling out the patient to a series of separate appointments. Our primary care staff currently includes two physicians, a physician’s assistant, a primary care nurse practitioner, a nurse, a social worker, and a psychologist. Because complete services are offered, we divide many of the primary care components among different members of our staff.
o For Clinicians Treat Adults Younger patients may be uncomfortable with medical procedures already routine for adults. Clinicians may need to spend more time explaining the purpose and procedure of pelvic, male genital, and breast exams (1). Adolescents may be experiencing their first pelvic, male genital exams, and breast exams, therefore, their clinician must be sensitive to feelings of invasion and discomfort that the patients may have. The routine drawing of blood, quite familiar to adults, might be an unpleasant surprise for adolescents accustomed to the ‘Sngerprick” when they were younger.
Natural History As of 1993, we know that the interval from HlV infection to AIDS defining illness is 11 years on the average. At this point, we think that HIV infection in adolescents is more similar to that in adults than that in children, possibly because the infection in adolescents occurs after the immune system already has developed (3). However, one study seems to indicate that adolescents with hemophilia show a slower progression of HlV infection than either adults or children (4). Staging of HIV Infection
o For Clinicians Who Usually Care for Adolescents, but Are New at Understanding management of HIV infection will be of principal concern. The discus,sion that follows is about HIVspecific physical and laboratory assessment, prophylaxis, and treatment.
Clinical management begins with a staging evaluation in order to assess immune function and establish whether the patient is asymptomatic or symptomatic. The staging of the infection allows the practitioner to assess the need for early intervention and to plan prevention and treatment. The new staging and classification system,
rely on the staging classification systems to organize and plan care, s/he must also be cognizant that the definitions may not yet fully include the symptoms in adolescents. Longitudinal studies of HIV in adolescents are needed to elucidate the uaique features of viral progression m this age group.
proposed by the Centers for Disease Control, creates classifications based on clinical as well as immunological assessments (51. Although this staging system describes the progression of infection in children and adults, rather than in adolescents per se, it still can guide treatment plans and management. The new classification system includes laboratory assessments in addition to clinical manifestations to stage the HIV infection. Specifically, the classification system creates three CD4 cell categories, >500/mm3, 200-499/mm3, and <200/mm3, to describe the levels of immune function at different points in the progression of HIV infection. A patient would be considered to have “AIDS” if her/his CD4 count is below 200/mm3 whether or not any of the “AIDS-indicator conditions” are present (5). Patients with CD4 counts of 500/mm3 or less are currently potential candidates for anti-retroviral medication. In addition to CD4 counts, medical history of HIVrelated illnesses, review of systems, and laboratory assessment of immune system all form the basis for staging of HIV infection. Staging definitions have been formulated primarily by using data from male adults. Therefore, adolescents, and female adolescents in particular, may not fit into these definitions. For example, severe pelvic inflammatory disease or recurrent vaginal candidiasis may indicate immune dysfunction in HIV-infected females, but do not meet the CDC criteria for AIDS. By including the CD4 count criterion and the presence of invasive cervical cancer as part of the classification system, it is hoped that the CDC’s expanded definition will include more women who might have been previously excluded from the case definition and, therefore, from certain entitlements. However, adolescent females may not have the same incidence of invasive cervical cancer because they may not have had sufficient time for HIV and human papfioma virus (HPV) infection to progress- This particular complication underStates the rate of AIDS in this age group. Therefore,
although the
practitioner may
III.
THE INITIATION OF CARE 0 HIV as a Chronic Serious Illness The provider can help facilitate the entry of an adolescent into care by encouraging the patient to think of HIV as a chronic disease, requiring ongoing management. The adolescent who has recently learned that s/he has HIV infection needs emotional and educational support as much as a thorough medical work-up-provided that s/he presents no major symptoms. The practitioner certainly needs to gather information about her/his new patient; but, most immediately, must establish a trusting rapport as the youth’s primary care provider (6). Medical Evaluation Initial medical evaluation for primary care of an HIV-positive adolescent may take place over one to three visits. It includes: Complete medical, sexual, drug use, and social history Review of systems Complete physical examination Laboratory assessment Other elements of the initial visits include psychosocial assessments and counseling, information and education about HIV, HIV test counseling, financial planning.. and entitlements counseling. Histories A medical history intake for adolescents with HIV should include social, psychological, sexual, drug use, and family histories. Some aspects of an HIV-specific history include: o Seroconversion
Illness
Evidence to help date acquisition of the
HIV/AIDS MEDICAL MANAGEMEhJT
Table 2. Elements of a Sexual Risk History 1. At what age did you begin sexual fntercourse (oral, vagiial, or anal) and how old was your partner? 2. Do you consider yourself heterosexual, homosexual, or bisexual? 3. Do you have sex with men, women, or both? 4. Have you ever had the following sexual experiences; if so, how often and with how many partners: oral, vaginal, or anal intercourse, receptive or insertive? What percentage of time were condoms used? Describe those experiences in the past month. 5. Describe the number of sexual partners you have had, their ages, and if any of them had known risk factors for HIV infection. 6. Have you ever had an STD (name all of them, describe symptoms, provide treatment history)? 7. What forms of birth control have you used? Describe. Have you done anything to try to prevent STDs? What? 8. Have you ever been pregnant, had a baby, or had an abortion or miscarriage? 9. Have you ever used drugs of alcohol before or during sex? 10. Have you ever had sex in exchange for food, money, drugs, or a place to sleep or live? 11. Has anyone ever forced you to do something sexually that you didn’t want to do? 12. Do you have any questions or concerns about your current sexual experiences? 13. What are you doing to protect yourself and your sex partners born being infected with HJV? 14. What do you know about safe and safer sex? How do you feel about changing your sexual behavior to prevent HIV infecticm? What sexual ‘behavior will you miss? How does your partner feel about safe sex? I j. Do you think condoms can prevent the spread of HIV and SD%? If so, what makes it hard for you to use condoms? Did you use a condom the last time you had intercourse? Why or why not?
HIV infection includes a mononucleosislike syndrome of fever, malaise, lymphadenopathy, and variable multiple organ system involvement (7). o Past Conditions That May Represent
HIV Infection
* Opportunistic infections * Recurrent infecticms, weight loss * Failure to gain weight during pubertal growth spurt o Prior Illnesses to Ascertain Sexually transmitted diseases Recurrent pneumonia Vaginal candida Tuberculosis-which can be reactivated in the presence of HIV or during puberty
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atients Possibly Infected Pe~nat~~ly Seek history of parent’s drug use and HIV-related risk behaviors or known HIV infection.
Social History Include current Iiving situation, schooi status, work status, social supports. Establish who, if anyone, knows about patient’s HIV infection.
Assess past or present depression, anxiety, suicidal thoughts and/or attempts, psychoses, hospitalizations, or treatments. [See Module Four: Psychological and Social Assessment and Treatment.1
Thorough sexual histories are necessary for the provision of HIV-related care, both to formulate a risk-reduction plan, as well as to help the patient raise any concerns about sexuality with the provider (see Table 2 for a sample sexual history). With practice, the provider can integrate a sexual history into a routine medical history. Some practitioners find discussing a patient’s sexual experiences to be the most difficult aspect of history intakes. One way to begin is to acknowledge that sexual behavior is difficult for some to discuss and also to stress the co&dentiality of the entire interview process. The practitioner might say:
“Some of the questions Zneed to ask are very personal, especially the ones about sexual experiences, but they are very important in helping us work together. Remember, everything that uou say here will be kept private.” The health-care provider can choose whatever language s/he is comfortable using, but any potentially unfamiliar terms should be explained. It is often wise to take cues from the adolescent, using whatever language and vocabulary she/he uses.
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MODULE THREE
0 Concrete Language “Do JW,‘OU ever have vaginal intercourse, by this I mean when a man and a woman have sex with the man’s penis inside the woman’s vagina?” o Non-Medical Language “How oftm do you use condoms when you give “blowjobs,” that is, have oral sex?” “How often do you use condoms when you get “blowjobs,” that is, when someone has oral sex with you? ” o Closed- Versus Open-Ended Question At times, using a question that promotes an explanation (i.e., an open-ended question) is more effective than a question that allows for a yes/no answer. This may be particularly true when a topic is sensitive, and the patient may find it easier to deny a particular behavior than discuss it with the health-care provider. At other times, using closed-ended questions may be the most effective. In fact, the open-ended questions below are presump tive. When the practitioner’s language “presumes” particular behaviors, it can be off-putting to the younger patient, who might fear that the practitioner has special access to or information about her/his private history. Our recommendation, therefore, is to use a combination of explicit closed-ended and open-ended questions in soliciting histories depending on the patient’s responses to questions. EXAMPLE 1: Open-Ended: “How often do you have anal sex?” Close-Ended: “Have you ever had anal sex?” EXAMPLE2: Open-&deck “Please tell me about each of the times YOU have been told you have a sexually transmitted disease.” Close-Ended:
“Huve you had a sexually transmitted disease?” Most importantly, the questions should carry no assumptions regarding the client’s sexual orientation and sexual practices. Avoid labeling as homosexual or heterosexual unless the client labels her/himself. Sexual identit.j may be in flux during adolescence; the gender of people with whom the adolescent engages in sexual behaviors may be distinct from the individual’s understanding of her/his own sexual identity (8). That is, a young man or woman might engage in sexual activities with someone of the same gender, but not consider or label her/himself lesbian, gay, or bisexual. Questions about sexual partners ought to explicitly refer to the gender of the partner, not just abstract, genderless “partners” in order to both support and encourage the adolescent to speak about her/his same sex experiences. Suboptimal Approach: For example, asking a female only the question, “How many boyfriends have you had?” assumes she only has sex with males and that she considers herself to be heterosexual. Better Approach: Instead, the practitioner might state, “Many adolescents have sexual experiences with people of their own sex. I always ask my patients about their sexual experiences with people of the opposite sex and the same sex.” “How many sexual partners have you had who are male, if any? How many sexual partners have you had who are female, if any?” These questions encourage the patient to respond honestly, and also communicate to her/him that the provider is sensitive to patients who have sexual relationships with same-sex partners. @ Drug-Use History Establishing the adolescents’ risk status with respect to drug use is important in
EtXCAL MANAGEMENT
Table 3. Elements of Drug Use History 1. Do you, your friends, or your sexual partners ever use any
2.
3.
4.
5.
6. 7. 8.
9. 10. Il.
of the following: Alcohol, marijuana, crack, cocaine, heroin, amphetamines, hallucinogens (LSD, RX, barbiturates, sedatives, steroids? Are you using them in combinations? How? For each drug describe: age of first use, frequency of use in past month, average daily use, and ways used (pills, snorted, smoked, injected). In what settings do you use drugs: alone, with friends or lovers, at parties, where you buy the drugs (crack houses, shooting galleries)? For those who have injected drugs, describe the needle use: sharing frequency, with whom, use of works in shooting galleries, cleaning practices. For those who smoke crack, describe: frequclrcy of use, percentage of use in crack houses, frequency of sex in crack houses, and types of sex. How do you get money to obtain drugs? Have you ever had sex in exchange for drugs? Have you ever had a medical problem (i.e., visited a doctor or hospital) or tried to hurt or krll yourself related to drug use? Have you ever been in trouble with the law, your family, school, or a job, related to drugs? Do you think you are addicted or have a problem with drugs? Have you ever tried to “get off” drugs? What treatment programs have you tried? How else have you tried?
helping avoid reinfection or infecting others. See Table 3 for a sample drug history. There is a broad range of licit and illicit drugs that can be injected, including anabohc steroids and estrogens. Sharing HIVinfected needles, or “works,” is the specific behavior that puts an adolescent at risk for infection or infecting others. Non-injecting drug use, including crackcocaine or alcohol, may also put adolescents nt risk by compromising their ability to anticipate risky situations and make safer decisions. Additionally, addicted adolescents may barter sexual activity for drugs, SEalter, or food-“survival sex.” Practicing safer SPY may interfere with their ability to cc::,inue trading sex for drugs, for example, some partners refuse to allow condoms to be used. A complete drug history should establish whether an adolescent shares needles or “works” and also establish whether an adolescent’s pattern of drug use affects her/his ability to practice safer sex.
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Similar principles apply to a drug history as to a sexual history. A combination of open-ended and close-ended questions, concrete explanations, c2reful use of Ianguage, and nonjudgmental questions are all important in eliciting accurate information from a patient, as. well as communicating concern and openness.
STEMS
ECHFIC
Assess for presence of fatigue, fever, weight loss, night sweats, lymph node enlargements, skin lesions, or rashes. The growth spurt that occurs during adolescence is a unique feature of this age group. Unlike adults, a stable weight in an adolescent may not be a sign of good health. Thus, both the failure to gain weight in Tanner. Stages iI through TV and weight loss can signify HIV-related illness. Also, recent evidence from following HIVinfected children longitudinally into adolescence indicates that growth failure may be an indicator of HIV progression, even prior to declines in CD4 counts (9). cad, Eyes, Ears, Nose and Throat Assess: Visual changes (for cytomegalovirus)
N3ml
Sinusitis Dysphagia (for thrush) Mouth sores or gums for ulcers, inflammation, tooth decay. Respiratory System Assess for persistent cough and shortness of breath. Gastrointestinal System Assess for history of diarrhea, abdominal pain, abdominal masses, anal pain, or discharge suggestive of experience with anal intercourse.
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MODULETHRE6
l
apthus ulcers, or gum and dental disease o Assess sinuses
Neurologic System Assess for weakness, myalgia, pains, or abnormal sensations.
Perform Lung and Heart Examination
0 Neuropsychiatric
Perform Abdominal Examination o Note masses or hepatosplenomegaly
Assess for evidence of personality changes, dementia, depression, anxiety, and headache. Some of these complaints may be indistinguishable from those of chronic drug use; an accurate drug history and assessment of current drug use is therefore essential to accurate diagnoses. [See Module Four: Psychological and Social Assessment and Treatment.]
V.
Genital Examination Assess sexual maturity using Tanner and Whitehouse staging of secondary sexual characteristics (10) Do pelvic examination for females who have had sexual intercourse, unexplained pelvic pain, or are over 18 years old Do rectal inspection for all adolescents (even those who deny anal intercourse).
PHYSICAL EXAMINATION Changes in somatic growth and cognitive function characterize the period of puberty and adolescence. Growth should, therefore, be plotted on growth-velocity charts.
Neurological Examination [See Module Four: Psychological and Social Assessment and Treatment.1
General Examination Record vital signs, growth velocity (in terms of changes in weight and height over time), nutritional status, and skin.
Evaluate cranial nerves, reflexes, strength, sensation, and cerebellar function Evaluate mental status to establish baseline Assess ability to generalize or think abstractly by asking open-ended questions about a subject of interest to client. This assessment is important in providing the client with developmentang-appropriate explanations and recommendations. Conduct neuropsychological testing if practitioner suspects neurological involvement
Examine Lymph Nodes Lymphoid tissue usually regresses during adolescence b:rt may also be associated with the progression of HIV-related disease. o Describe location, number, size, consistency, and persistence of lymphadenopathy. Persistent generalized lymphadenopathy (PGL) is a symptom of HIV infection but can also indicate intercurrent illness, other sexually transmitted infection, such as syphilis, or lower-extremity trauma if it is confined to the inguinal area. During the HEENT Examination Assess visual acuity and perform fundoscopy, seeking evidence of CMV or toxoplasma retinitis Perform oral examination, seeking evidence of oral candidiasis, herpes,
VI.
LABORATORY ASSESSMENT The laboratory assessment performed during the initiation of care is crucial in determining the stage of J3IV infection. Whenever available, adolescent-specific values should be used (11). For example, normal ranges for immune system markers have not been established for adolescents.
HIV/AIDS MEDICAL MANAGEMENT
I
une Functicm
Assessment
Markers for immune function include: CR4 cell counts and percentages CD4/CD8 ratio Antibody bands (Western blot) p24 antigen Neopterin &-microglobulin At the initiation of cape for an HIV-positive adolescent, their Eevel of CD4 cells must be established. The level will guide decisions about prophylaxis and antiviral treatment. Decrease in CD4 lymphocytes, increase in P,-microglobulin, increase in neopterin, increase in HIV p24 antigen levels, and disappearance of antibodies to p24 (measured by bands on the Western blot) are indications of the progression of HIV infection. Adolescents do not appear to have the same degree of hypergammaglobulinennen;ia as HIV-infected infants and children. Blood Assessment A complete blood count can identify the presence of: o Anemia o Thrombocytopenia 0 Neutropenia During puberty, because of the effect of increased androgens in males, there is a dramatic rise in hemoglobin from mean of 13.5 to 15.5 g during adolescence (12). In females, however, the pubertal increase in estrogens lowers hemoglobin. Chemistry
Panel
o Renal involvement * * * *
Increased Increased Increased Decreased
is suggested by:
blood urea nitrogen (BUN) creatinine potassium serum bicarbonate
0
Low albumin levels may indicate malnutrition or malabsorption
0
An elevated total protein level may be present with an increased immunoglobulin fraction
0
Increased liver enzymes may indicate:
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Liver involvement or liver infection Adolescent growth spurt, with bony growth reflected by elevated alkaline phosphatase Disseminated MAC, also associated with elevated alkaline phosphatase Elevated lactate dehydrogenase (LDH) may indicate lymphoma Pneumocystis carinii pneumonia (PCP), or other pulmonary disease 0 Urinalysis * Cells, blood, or protein might indicate infection or renal parenchymal disease Laboratory Assessment Transmitted Disease
for Sexually
Work-ups for adolescents who are having sexual intercourse with same-sex and/or other-sex partners include: Gonorrhea culture from three sites: anus, penile urethra or cervix, pharynx Chlamydia test (immunofluorescent slide test or culture) Herpes culture of suspicious lesions Gram stain to detect inflammation, Candida or Gonorrhea (in males) #OH preparation for Candida Wet prep for trichomonads or clue cells (bacterial vaginosis) Syphilis serologic test Crapid plasma reagin with confirmatory fluorescent treponemal antibody) Hepatitis serologic test (Hep B sAg, sAb) (Papanicolaou cytology Cervical smear) to assess for dysplasia; (there is some evidence that HIV is associated with rapid progression of cervical neoplasia) (13) Tuberculosis
Assessment
Do purified protein derivative (PPD) with an anergy panel (Merieux multitest or Candida, mumps and tetanus antigen) Obtain baseline chest x-ray film for patients who are PPD positive and/or anergic The radiograph can also be used as a
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MODULETHREE
baseline for those patients velop respiratory symptoms o Toxoplasmosis
who de-
Assessment
o Obtain baseline titer for toxoplasmo-
sis, as it can reactivate in HIV-positive adolescents o Patients who have 1gC antibodies to toxoplasmosis should be carefully monitored for headaches or neurologic symptoms especially as CD4 cells decline below 200
VII. IMMUNIZATIONS Although some practitioners have expressed concern that immune-compromised individuals should not be given immunizations containing whole viruses, and/or that immunizations will not be effective, the weight of the scientific evidence indicates that HIV-infected adolescents benefit from receiving timely immunizations. The following immunizations are recommended by the CDC for HIV-positive children and adults: o Pneumococcal vaccine (14) o Influenza (yearly) (15) Update following irrsmunizations: o Td (tetanus and diptheria) o Measles, mumps, rubella one)
(three in
Assess immunity to rubella in all females; immunize those patients who do not have prior immunity. Give hepatitis B immunization to all patients without immunity and who have intercourse and/or inject drugs (16).
VIII. EXTENDING CARE: TREATING AND MONITORING HIV In this section, treatment suggestions are based upon current practices. Clincians should verify regimens with current FDA guidelines and should note that these may change as research iindings are applied. Obviously, these may change as more research findings are applied to HIV-related care of adolescents.
Puberty and Medical Treatment Although Tanner staging is a better method for determining the appropriate dosage for adolescent patients than chronologic age (171,few studies of drug toxicity or effectiveness are actually based on Tanner staging. As a practical guideline, adolescents in Tanner Stage 1 should receive pediatric dosing schedules and adolescents in Tanner Stage 5 should receive adult dosing schedules, regardless of chronologic age. Below are adult dosage schedules. Unfortunately, the appropriate dosages for adolescents in Tanner stages 2, 3, and 4 have not been clarified. Providers need to closely monitor such patients for signs of efficacy and toxicity. We already know that adults and children may respond differently to some HIVrelated medications. For example, children have fewer adverse reactions to trimethoprim-sulfamethoxazole (TMP-SMX) than adults. Children also have less hematologic toxicity than adults when taking zidovudine. Specific reactions of adolescents are unknown at this time, but the AIDS Clinical Trial Group will soon be conducting adolescent-specific trials, which will provide new information over the next several years. Drug efficacy and toxicity may be altered by use of tobacco, alcohol, or drugs, licit or illicit. Therefore, it is important that the practitioner obtain an accurate drug history. 0 Antiretroviral
Treatments Csec T,&le 4)
@ Prophylactic Treatments of Opportunitistic Infections Prophylaxis for PCP is crucial for patients who have had prior episodes of PCP or who have CD4<200/mm3. Three forms of prophylaxis are currently recommended: TMP-SMX, aerosolized pentamidine, and dapsone. TMP-SMX appears more effective, and it is also prevents extrapulmonary pneumocystosis because it is taken systemically. However, up to one-third of patients may develop allergic reactions and be unable to tolerate it. Because pen-
HIV/AIDS MEDICAL MANAGEMEI~
Table 4. Examples
of HIV Antirectroviral
Treatments Indications
Drug
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Usual dosage
Possible side effects
CD4 < 500/mm3 or any HIV-related symptoms
200 mg every 8 hr three times dailyb or 100 mg every 4 hr five times daily’” or 100 mg every 6 hr four times daily’
fatigue headache abdominal pain nausea anemia neutropenia elevated liver functions test
DDI [Didanosine Widex)l
Intolerance to, or worsening clinical status on, AZT > 6 months
If weight > 60 kg, 200 mg every 12 br or twice dailyf If weight < 60 kg, 125 mg every i2 hr or twice daily’
pancreatltis/elevated amylase peripheral neuropathy diarrhea headache insomnia nausea rash/pruritis abdominal pain
DDC [ Dideoxycytidine (ZalcitibineJl
intolerance to, or worsenmg clinical status on, AZT > 6 months
.75 mg every 8 hr or three times dailyg
pancreatitis/elevated amylase peripheral neuropathy diarrhea headache insolrmia nau,sea rash/pn&is abdominal pain
AZT
[Zidovudine, ZDV (Retrovir)]
“From reference no. 18. “AAP’s usual dosage (from reference no. 19). ‘Other practitioners and clinics rnz. use these doses. dPossible times: 8 a.m., noon, 4 t’.n~., 8 p.“., midnight. ‘From reference no. 20. . ‘May b? used alone or in conjcnc,ion with AZT. RGenerally used in conjunction with AZT.
tadimine can be taken through a nebulizer once per month, compliance may be easier for adolescents. While less is actually known about dapsone, so far it appears to be more effective than pentamidine.New recommendations are expected soon for prophylaxis against MAC, Toxoplasma gondii, Crypflrcoccus, and CMV.
VIII. ORGANIZATION Appointment Intervals Asymptomatic patients are given appointments at three-month intervals to assess status of immune system and psychosocial state. This is more frequent than adult programs usually recommend, reflecting the
increased support needed by adolescents. Appointment intervals for symptomatic patients tend to be shorter, depending on their clinicalstatus. Suggested intervalsfor nronitoring and treatment for patients at ~ch of the three stages are provided for ;a) asymptomatic, relatively healthy immune system; (b) mildly symptomatic and/or CD4 cells between 200 and 500/ QUIP;(c) symptomatic and/or CD4 cells less than 200/mm3. sYm une Function Patients These patients have few or no symptoms, with CD4 count above 500/mm3. Routine appointments and laboratory assessments for these patientsare made every 3 months (see Table 5).
46!5
MODULE THREE
o Fever > 103°F at any time Fever > 101°F for 3 days or more o Shortness of breath o Persistent diarrhea o Unusual bleeding o Persistent heailache 0 Localized weakness, paralysis, change in balance or sensation 0 Seizures or loss of consciousness o Visual changes o Changes in mental status (7)
Table 5. Practical Guidelines Frequency
Pr@cedure Update medical history Review of systems Physical examination Immune function monitoring” Complete blood count’
Chemistry panels”
Screening for STDs Cervical cymlogy PPD/Anergy panel Toxoplasmosis assessment Immunizations
Each visit Each visit Each visit Every 3 months Every 3-6 months -orEvery 1 month for patients on AZT to check for anemia or toxicity Every 3-6 months for patients taking potentially toxic medications Every 612 months Every 6-12 months Every 6-12 months Yearly in unexposed patients As recommended &e p. 43)
These should be modified to suit individual needs. “Every 6 months for patients with CD4 > 600/mm3.
Monitoring Patients Who May Have Symptoms, with CD4 500/mm3 or Less Adolescents at these stages of HIV iniection need more frequent monitoring, particularly if they are taking an antiviral or prophylactic medication. We schedule routine visits every month for this group. But, if a patient is beginning a new medication regimen, we may schedule more frequent visits to monitor adherence, toxicity and response, as in the case of AZT (see Table 51. Monitoring Patients Who Are Symptomatic and/or with CD4 200/mm3 or Less As immune dysfunction in patients progresses, visits increase from once every 3 months to monthly. Laboratory monitoring also becomes more frequent as comblnations of treatments become more complicated. Non-Routine
o
Care
At times, HIV-positive adolescents will need to seek care for non-routine problems. We let them know they should contact AAP with any questions or concerns about their health, but we ask them to call US immediately (24 hours/day) if they have any of the following symptoms (6):
IX.
or
FOLLOW-UP AND MANAGEMENT OF CARE 0 Planning a Visit Before the patient arrives for her/his appointment, clinic staff must plan that visit. At the AAP, we do so by recording relevant information from patients’ charts, recent laboratory values, and specialists’ findings on a clinic flowsheet. This procedure allows for the consolidation’ 6f allinformation about a patient’s care, both medical and psychosocial, into one place. (See Appendix B.) @ Case Co&aference Prior to each clinic session, the entire staff reviews information on all patients scheduled for visits as well as coordinates visits between the medical and mental health providers. Q Charting In order to organke care, plan visits, and anticipate problems, maintaining a longitudmal record of symptoms and lab assessments is of particular importance in the care of HIV-positive adolescents. We use an HIV-specific form to accomplish this track&g. (See Appendix A.) o Follow-Up Clinic staff members need to actively track patients, particularly asymptomatic teenagers who may not feel ill and, therefore, may not really be convinced of the importance of their receiving ongoing medical
HIV/AIDS MEDICAL MANAGEMENT
and psychological care. These two aspects of follow-up are important in ensuring that HIV-positive adolescents receive necessary care: o “One-Stop Shopping” HIV disease often necessitates involving a variety of subspecialists. Whenever possible, the clinic should arrange for the specialist to come to the regular site of care. For example, AAP offers onsite psychosocial assessment, support group, and gynecologic care including colposcopies. When patients must be referred off-site to receive care from specialists, staff can make appointments for patients, preferably on the day they are already scheduled to be seen. Otherwise, AAP staff ascertain that the patient clearly understands the location and direction to the specialist’s office. Following the appointment, a staff member might call the specialist to confirm that the patient actually kept the appointment. At the AAP, all patients receive telephone reminders of their appointments. 0 Telephone Follow-Up for Missed Appointments When patients miss appointments, staff should ask patients the reason in order to help solve problems, zJlay fears, and clarify any concerns about potential treatments and/or conditions. Although they are time consuming, these follow-up steps are crucial in helping to promote continuity of care.
X.
ENCE T Treating adolescents with HIV presents special challenges with regard to adherence to a treatment plan. The sensitive practitioner can do much to reduce barriers and open a dialogue with the adolescent about her/his medication regimen (21). The practitioner should be aware that the developmental level of ail adolescent will affect her/hi ability to comply with a treatment regimen. Concrete thought processes, feel-
47s
ings of immortality, and capacity for denial that often characterize adolescents demand that the practitioner consider the patient’s cognitive level in providing advice and information. Also, an individual’s feelings about and associations with the medication regimen will affect compliance. For example, one teen who was a former “crack” user, had difficulty complying with his pentamidine regimen because it reminded him of his former addiction. After the practitioner discussed his fears of becoming involved with drugs again, he became more comfortable taking the pentamidine and complied more easily. For aisenfranchised adolescents, such as those who are homeless, imedical compliance may be of lower priority than securing food and shelter. To promote compliance, these other problems must be addressed, whether by medical provider or effective referrals. The practitioner can affect patient compliance by anticipating and discussing obstacles. To improve compliance: &ions for Taking Confirm patient’s understanding of the instruction by asking her/him to repeat it to you. Assist the Teen
utine
Help patient make a sch4ule for taking medications. Be specific and concrete. Ascertain that the patient knows and understands the reasons and relative priority of each pill in a complicated regimens. For example, to assist patient in taking AZT, the provider might say: “YOUneed fo take AZT three times each day. Let’s discuss ‘whez you could do that. It’s inzportanP that fhe time between each pill is about the same. Okay, when could you take you first pill?” (After patient answers) “What will help you remember to fake it then?” (If patient does not know) “How about when you brush your teeth?”
4s
MODULE THREE
procuring Medicaid or if available, ADAP. [See Module Five: Case Management.] Arranging payment for medical services often requires complicated considerations. Physicians may need to adopt a “first see then pay” approach as adolescents may need careful counseling regarding the method by which they choose to pay for their care. Using patients’insurance policies may not protect the confidentiality of the adolescent. Disenfranchisedor low-income youth might be candidates for Medicaid. The provider needs to anticipate and discuss such possibilitieswith patients.
e Anticipate and Discuss Obstacles
to Compliance Ask patient: “Whatwill you do if someone asks what the pillsare fir?” “Wherecan you keep @s?” “Do people where you live know about your HIV infection? Can they know about your medications? lf not, where is a private place you can keep them?” “Do you usually sleep in the same place each night? Zf not, will you keep pills at euch place? Will you cary a supply with you?” o Continue to Problem Solve with and Reward Patients Already Taking Their Medication Recognizethat patientswill need some time to adjust to a new medication schedule.They may not be able to immediatelycomply with the regimen. Praise and encourage adherence,even if it is only partial. Help patients feel competent. Give pill timers to help patients remember medication. Promote better compliance. Askpatient,“Which pill do you usually miss?” Strategize ways to help patientrememberthat pill. Ask patient, “On how many days do YOU usually take your pills?” Elicitreasons the patients believes she/he misses particular days. Consider ways to increase pill taking to all days. o Inform patient about any objective measures of medicationcompliance which may exist for her/his medications.For example, in the case of AZT, macrocytosis occurs as a measure of the drug in the bloodstream. o Anticipate Financial Problems with Medications Ask patient, “Do you knowhow you will pay for fhe medications?” If not, assist patient in
ENDNOTES 1. Hein K. An adolescent’s first pelvic exam-A
2. 3.
4.
5.
6. 7.
8. 9.
10. 11.
12. 13. 14. 15. 16.
therapeutic opportunity. Physician Patient 1985;42-50. Soloway B. Adapted from personal communication. Goals of HIV Primary Care, 1989. Futterman D, Hein K. Medical management of adolescents. In: Plzzo P, Wilfert C, eds. Pediatric AIDS The challenge of HIV infection in infants, children and adolescents. Baltimore, MD Williams and Wilkins 1990;38:546-60. Goeddert JJ, Kessler CM, Aledort LM, et al. A prospective study of human immunodeflciency virus type I infection and the development of AIDS in subjects with hemophilia. N Engl J Med 1987;321:1142-8. Centers for Disease Control. 1993 revised classification system for HIV infection and expanded surveillance case definition for AIDS among adolescents and adults. MMWR 1992; 41:1-17. Hecht FM, Soloway B. HIV infection: A primary care approach. Massachusetts Medical Society, 1992. Tindall B, Cooper DA, Donovan B, Penny R. Primary HIV infection: Clinical and serological aspect. Infect Dis Clin North Am 1988;2:329. Remafedi G. Adolescent homosexuality: Psychosocial and medical implications. Pediatrics 1987;79:331-7. Brettler DB, Forsberg A, Bolivar E, et al. Growth failure as a prognostic indicator for progression to acquired immunodeficiency syndrome in children with hemophilia. J Pediatr 1990;1173584-8. Tanner JM. Growth at adolescence. London: Blackwell, I962. Fisher M. Laboratory testing. In: Friedman SB, Fisher M, Schonberg SK, eds. Comprehensive adolescent health care. St. Louis: Quality Medical, 1992231-7. Rowe I’, ed. The Harriet Lane handbook: A manual for pediatric house officers. Chicago: Year Book Medical, 1987. Minkoff HL, DeHovitz, JA. Care of women infected with the human immunodeficiency virus. JAMA 1991;266:2253-8. Centers for Disease Control. Pneumococcal polysaccharide vaccine. MMWR 1990395-22. Centers for Disease Control. Prevention and Control of influenza. MMWR 1992;41:1-17. Centers for Disease Control. Protechng against viral hepatitis: Recommendations of the Immunizations Practices Advisory Committee. MMWR. 1’990;39:5-22.
HIV/AIDS
17.
Hein K. The use of therapeutics Health Care 1987;8:8-35.
18.
National Institute of Allergy and Infectious Diseases. State of the Art Conference on AZT Therapy for Early HIV Infection. JAMA 1990;363:1606-9.
19.
Collier A, et al. A pilot study of low-dose zidovudine in human immunodeficiency virus infection. N Engl J Med 1990; 323:101~21.
in adolescence.
J Adolesc
20.
Bristol-Meyers Squibb. Videx: Antiviral therapy for HIV infection. Princeton, NJ: Bristol Laboratories, 1991.
21.
Friedrlan IM, Litt, IF. Adolescents’ compliance with therapeutic regimens. J Adolesc Health Care 1987;8:62-7.
MEDICA!- MANAGEMENT
Hein K. The use of therapeutics Cage 1587,6.8-35.
in adolescence.
49s
J Adolesc Health
Hein K, Futterman C. Medical management of HIV-infected adolescents. In: Hauger S, Nicholas S, eds. Guidelines for the care of children and adolescents with HIV infection. 1 Pediatr 1991; II9:518-20. Hein K, Hurst ML.HIV-infection Gynecfil 1988;1:73-82.
in adolescence.
Adolesc Pediatr
Kipke M, Futterman D, Hein K. HIV-infection and AIDS during adoiescence. In: Farrow J, ed. Adolescent medicine. Medical Clinics of North America. Vol 74. Philadelphia: WB Saunders, 1490: 3 149-67. Kipke M, Hein K. HIV-related syndromes during adolescence. In: McAnamey ER, Kreipe R, et al. eds. Textbook of adolescent mecicme. i%ladelphk: WB Saunders, 1992:711--9.
eferences about Adolescent
Mediral Futterman D, Hein K. Medical care of HIV infected adolescents. AIDS Clin Care 1992;4:95-B. Futterman D, Hein K. AIDS and HIV infection. in: Friedman S, Fisher M, Schonberg SK, eds. Comprehensive adolescent health care. Minneapolis, MO: Quality Medical, 1992:521-31. Futterman D, Hein K. Medical management of HIV-infected adolescents. In: Pizza P, Wilfert C, eds. Pediatric AIDS: The challenge of HIV infection in infants, children and adolescents. Baltimore, MD: Williams and Wilkins, 1990546-60.
Freidman S, Fisher M, Schonberg SK eds. Comprehensive cent health care. St. Louis Quality Medical, 199247-52. McAnamey R, Kreipe R, t’~ &. ds. Tcwtbook of adolescent icine. Philadelphia: WB Saunders, 19Y?24-9.
med-
Office of Technology Assesssltv,t. Mbshington, DC: adolescent health 1991;IJJII. Tanner JM. Growth at adolesr:tincP,ZWI edition. London: Blackwell, Scientific, 1962.
General References akmuf AIDS
Futterman D, Hein K, Reuben N, Dell R, Shaffer N. HIV-infected adolescents: The first 50 patients iq a New York City program. Pediatrics 1993;91:730-5.
AIDS Clinical Care Newsletter
Hein K. Adolescent AIDS: A paradigm for training in early intervention and care. Am J Dis Child 1990;144:4&8.
AHCPR Guidelines pres&.
Hein K. AIDS in adolescents. In: Imperato PJ, ed. Acquired immunodeficiency syndrome: Current issues and scientific studies. New York, Plenum Medical, 1989:66-72.
Hecht FM, Soloway 8. HIV ink&on: Massachusetts Medical SC&q?, l’lX.
Hein K. The first pelvic examination. 64.
Treatment Issues: Newsletta (7~ Experimental New York: Gay Men’s Fiealt~~C'r~bib
Women Health 1984;9:47-
adoles-
for Earl-; 1VV Int**rwntion and Care 1993 (in A primary
care approach
People With AIDS Healtia Group Newsletter AIDS Therapies
Appendir A. Laboratory Flow Chart
__
NAME
RESULT RESULT
HIV AB
IMMUNIZATIONS: PNEUMOVAX
M.R.# DATE DATE DATE dT
INFLUENZA
HEPATITIS B SEROLCM?? HepBSAb HepBSAg HEPATITIS B IMMUNIZATION: TB/IMMUNE RESPONSE: TEST DATE? PPD ANERGY PANEL IMMUNE
FUNGI-ION:
TEST DATE CD4 ax% ax/CD8 Iga IgG IgM
HEMATOLOGY: TEST DATE DIF’F/ANC HGB/HCT MCV PLTS
CHEMiSTRYz TEST DATE TP/ALB SGOT/SG~ LDH/ALK PHOS CPK BUN/CREAT
HepBCAb
.
Appendix
A (continued)
NAME URINE: TEST DATE WBC RBC CHEMISTRY BACTERIA CELLS CULTURE SENSITIVITY STDKYN: TEST DATE VDRL ORAL CC ANAL GC GENITAL GC GENITAL CHLAMYDIA TRICHOMONAS CONDYLOMA (SITE) WET PREP PAP SMEAR CANDIDA MISCELLANEOUS: TEST DATE TOXO TITER CMV TITER EBV TITER CRYPT Ag MAC CULTURE THRUSH STOOL PATHOGENS OTHER
EXAM DATE WEIGHT
--
-
M.R.#
20
0
Thomas N
CD4 = 100
MAtZlA P.
JAME/AGE/#Y
F/U
Inform HIV results
ACTG #220
awe throat
Fever, cough.foot p,sin DLscu~ ACTG #220
ACllVEPROBLsiM!5
REPCLINIC DATE
Appendix B, Clinic Flowsheet
6X5,
diidin
CK, WAL Throatcx
cBc.0loodoc w, CD4 CXR
liepat&
Ellwil
0 #3
AZT l?vftwh4x
MEDW’AC
NUtXiUOtl
CONSLTS/AIW
HlVtestfor
BF
Discuss support group
Dkckxe~~ti Livitlg will
P!%CH~/RISICREDUCI’ION
yes
yes
MEDICAIC