Chapter 3
Core Elements Of HIV Primary Care

John McNeil, MD
John V. L. Sheffield, MD
John G. Bartlett, MD

Initial Evaluation   TOP

What are the goals of the initial evaluation?

The goals will depend to a large extent on why the patient is being seen by the primary care provider, which may be because of symptoms, the need for evaluation after a positive HIV test, referral, for a consultation, etc. The initial evaluation should be tailored to the patient's specific need, but the following are the usual goals of the initial evaluation:

• Evaluate HIV-related complaints that require immediate intervention
• Establish a strong patient-provider relationship with clear lines of communication
• Initiate a complete medical database (Table 3-1)
• Assess the patient's understanding of HIV disease
• Identify health needs for current medical problems, including those associated with mental health, substance abuse, hepatitis, and hypertension
• Assess the need for social and psychological intervention
• Assess the need for consultants for medical, social, or psychiatric care
• Describe HIV disease in lay terms, including natural history, laboratory tests (CD4 cell count and viral load), complications, treatment, and outcome
• Describe methods of transmission and of prevention

This is a large menu, and there may need to be several "first visits."

What are the important aspects of the initial evaluation in patients with symptoms?

It is critical to learn quickly if the patient has any HIV-related complications that indicate advanced disease and may require rapid intervention. The most common presentations related to earlier HIV disease are thrush, weight loss, skin lesions of Kaposi's sarcoma, Pneumocystis carinii pneumonia (PCP), and fever. Patients with HIV can also have medical conditions that stem from other causes, such as headaches, upper respiratory infections (URI), gastroesophageal reflux disease (GERD), hypertension, diabetes, or heart disease. Distinction between these and conditions that are HIV-related may be obvious, but when not, the best laboratory test is a CD4 cell count, which represents the barometer of immune function with HIV infection. Nearly all HIV-related complications occur when the CD4 cell count is <200/mm³. It may take 2-3 days for the laboratory to report the CD4 cell count, but clues to late-stage disease include evidence of chronic illness with weight loss and/or fever, and/or a total lymphocyte count of <1,000 mL which is readily available from a stat complete blood count (WBC x % lymphocytes). Late-stage HIV also is an indication of some urgency to initiate antiretroviral therapy. Some patients present with late complications such as PCP, cryptococcal meningitis, toxoplasmosis, or cytomegalovirus (CMV) retinitis. When these are in the differential diagnosis, the workup may require hospitalization, consultation, extensive testing, and frequent followup by telephone or clinic visit. These are medical emergencies — all are ultimately lethal and all are treatable.

What are important aspects of the initial history in asymptomatic patients?

The encounters should be tailored to the idiosyncrasies of the individual patient's needs supplemented with the collection of some routine information about their HIV and general health status. The patient's most pressing concern may require confirming the diagnosis, addressing denial, dealing with "HIV hysteria," evaluating conditions unrelated to HIV, or evaluating for antiretroviral therapy (ART). For patients with prior medical treatment for HIV infection, the previous records are often critical for efficiency in time and cost. When possible, these should be brought by the patient or sent in advance of the visit. The type of information that is particularly useful is the record of CD4 cell counts and viral loads, HIV-related complications, current and prior medications, including information about tolerance, toxicity, and adherence (see Table 3-1).

What information do patients need to know about HIV?

HIV is a chronic infection, which will be lifelong, and its outcome will depend to a large extent on the patient's understanding of the disease process and management. Parallels with type 1 diabetes are clear. With this in mind, it is very important that the patient have access to information to advance his or her understanding of the disease. Essential knowledge includes:

• Transmission. Sex, injection drug use, and perinatal transmission are the "big 3" and have accounted for virtually all cases in the United States since blood began being screened in 1985.
• Natural history. Explain the 5 stages: 1) acute HIV, 2) seroconversion, 3) long period with no symptoms and decreasing CD4 cell count, 4) complications when the CD4 cell count is <200/mm³, and 5) lethal outcome. Emphasize that without therapy the average untreated patient survives about 10 years from HIV acquisition to death, but there is a great deal of individual variation.
• What does the CD4 cell count mean? This is the cell that becomes infected with HIV, it is also the quarterback of the immune system, and the count is a barometer of immunosuppression. Normal is >500/mm³; a count of <200/mm³ is the definition of AIDS.
• What does the viral load mean? This indicates the amount of HIV in the blood. The average is about 30,000 copies per ml (c/ml), but again there is a great deal of individual variation. When it is high, the CD4 cell count tends to decline rapidly (negative CD4 slope). The goal of therapy is to reduce the viral load to undetectable levels, and with this the CD4 cell count usually increases 100-150 cells/mm³ each year.
• Therapy. Potent antiretroviral therapy (ART, also called highly active antiretroviral therapy, or HAART) has revolutionized the course of this disease. Although a miraculous development, HAART is also terribly demanding for the patient in terms of adherence, and some patients have big problems with side effects that are either short-term (eg, nausea, rash, asthenia) or long-term (eg, fat redistribution, hyperlipidemia, peripheral neuropathy). The benefits clearly outweigh the risks, and HIV is no longer an inevitably progressive disease, but is a chronic condition such as hypertension or diabetes that requires continual observation and care.
• Cure. No cure yet and unlikely to be with any of the current medications.
• Prevention. See discussion below.

For more information, see Chapter 2: Approach to the Patient (section on Patient Education, especially Table 2-1, Information Resources for Patients).

How should prevention be addressed?

Prevention needs to be addressed early and frequently, usually at every encounter. Nearly all adults who acquired HIV after 1985 did so by sexual exposure or needle sharing in the context of injection drug use. Patients in HIV clinics now constitute an important source for HIV transmission by the same mechanisms. Health care providers are now considered essential in risk reduction with a 3-part responsibility:

• Risk behavior screening. Patients need to be screened for risk behaviors. The screening includes a history of sexual practices and a clinical assessment for evidence of sexually transmitted diseases (STDs). The history of sexual practices can be taken before patients are seen by the primary care provider, either by another staff member or by having patients complete questionnaires. A component of the assessment includes evaluation for STDs because having STDs is associated with a 5-fold increase in the risk of transmitting HIV and also indicates high-risk sexual activities. Women under 25 years old should be screened for cervical Chlamydia trachomatis, all symptomatic patients should be evaluated for gonococcal and chlamydia infection, and asymptomatic patients should be considered for screening for these pathogens. Screening is now facilitated by the use of urine specimens for nucleic acid amplification tests (NAAT) for both N. gonorrhoeae and C. trachomatis.
• Risk reduction counseling. The second component of prevention is risk reduction counseling, which may be done in the office or through referral. It is critical that patients be fully informed about how HIV is and is not transmitted and that they be counseled about how they can reduce the risk of transmitting HIV to others.
• Partner referral. The third component, partner referral, involves asking patients to identify persons whom they have placed at risk through sexual or drug-using behaviors. These persons are then referred to a "Partner Counseling and Referral Service" (PCRS) without identifying the source of the information. The PCRS provides public health resources for confidentially informing partners that they have been exposed to HIV and need HIV counseling and testing.

For more information on prevention, see Chapter 2: Approach to the Patient (section on Risk Assessment and Counseling), Chapter 4: Prevention of HIV in the Clinical Care Setting, and Chapter 13: Management of Substance Abuse .

What are common patient questions?

Patients have many questions when they are newly diagnosed with HIV.

• What will happen to me? Patients need to know the facts of HIV regarding prognosis, but emphasis should be placed on the extraordinary benefits of therapy, which, for many, may mean a normal lifespan.
• Can HIV be cured? Not with current drugs (but it can be contained).
• Will I need to take medicine forever? Patients who respond well to therapy will probably be able to discontinue treatment periodically, but regularly scheduled treatment interruptions generally result in poor long-term control of HIV.
• Would alternative medicine help me? Probably not, but some patients seem to think it does. Patients should be encouraged to report any alternative medicines they are taking because some of them are problematic in combination with ART.
• Will I give HIV to the people I live with? Patients can give HIV to anyone they have sex with or share needles with; however, they also need to understand that people who live in the same household without that kind of contact are not at risk. It is probably best for people with HIV to have their own toothbrushes and razors and not to share eating utensils that have not been washed, even though HIV is not generally transmitted that way.
• Are pets a problem for me? Pets don't give or get HIV. Occasionally cats will become the source of Toxoplasma gondii or Bartonella, but this is rare; patients should wash their hands after handling pets and especially before eating, avoid contact with cat stool to prevent toxoplasmosis, and avoid cat bites and scratches and fleas to avoid bartonellosis.
• Should I have a special diet? Nutrition is important, but there is nothing idiosyncratic about the needs of people with HIV (see Table 2-1 in Chapter 2 for nutrition resources). With late-stage disease, it might be smart to avoid ingesting lake water because of Cryptosporidium parvum, which is commonly present and can cause chronic disease.
• Can I travel? Certain vaccines required for travel to developing countries are best avoided by people with suppressed immune systems, but vaccines rarely interfere with travel. The biggest problem may be access to good health care and the usual conditions such as traveler's diarrhea that can affect any traveler.
• What will happen if I am around someone with a cold or some other common infection? This type of exposure would probably cause nothing more than an ordinary cold. People with HIV infection do not become susceptible to infectious complications until the CD4 cell count is low. Then they become vulnerable to a very specific menu of infectious disease complications that are extremely rare in the general public. The infections that are common, such as upper respiratory infections or gastroenteritis, are generally no worse in a person with advanced HIV disease than in a healthy person.
• My cousin has a newborn infant that I want to visit. Is this a good idea? There should be no reservations here and no reason to talk about HIV infection. It's okay to hold, kiss, and hug the child; patients should just obey the simple rules of hygiene that they would under ordinary circumstances.
• Who should I tell? People who have been placed at risk either sexually or through drug use need to know, and either the patient can tell them or health department staff can do it. The reason is that they need to be tested so that if they are infected they do not transmit HIV to others, and they also need to gain access to care, which is critical. Beyond that, patients should be counseled to be very careful who they tell about the diagnosis.
• Do I need to tell people at work? Generally no. HIV is not transmitted by HIV-infected workers in the work place. A rare exception is some health care workers who could conceivably transmit HIV infection during surgery. Most institutions have policies about health care workers who perform invasive procedures, and these need to be followed. Otherwise, there are no other circumstances in which anyone needs to know unless the symptoms of HIV interfere with effective performance.

What should be covered in the physical exam?

Everything, but special attention should be paid to scrutiny of the vital signs, enlargement of lymph nodes, skin lesions, enlargement of liver or spleen, and mental status (see Table 3-1).

What are the initial laboratory tests to order?

Standard laboratory testing should be done to stage the HIV disease, determine the general health status, and identify the presence of concurrent conditions, and baseline tests should be done on patients who are candidates for ART (see Table 3-2). In general, the CD4 cell count identifies the need to treat with antiretroviral drugs, and the viral load is the major indicator of therapeutic response.

Ongoing Care   TOP

After the initial evaluation is completed, how often do patients need to be seen?

In general, patients with early-stage disease are seen at 3-month intervals to undergo routine medical evaluation and monitoring of CD4 cell count, viral load, and CBC. During the initial evaluation more frequent visits are common because there is so much information to transmit. Visits should also be more frequent when therapy is introduced and when the CD4 cell count is <200/mm³ because complications are more likely. It is very important for the primary care provider to thoroughly understand HIV and its complications. In general, the patients are in 4 categories with some overlap: 1) those with a CD4 cell count of >200/mm³, whose complaints are rarely due to HIV or its complications, 2) patients with a CD4 cell count of <200/mm³, whose new complaints usually reflect an HIV-related complication which is usually both potentially serious and treatable, 3) patients from either group who are receiving ART and other medications, in which case the side effects of the drugs must be considered, and 4) patients with other medical problems, which is actually the rule rather than the exception because of the high frequency of concurrent conditions.

How can one provider take care of all of the problems?

HIV is generally a complex disease in patients with complicated lives, lifestyles, and concurrent conditions. They are best served by a multidisciplinary team with ancillary services for support regarding case management, mental health, substance abuse treatment, transportation, and housing assistance, using the chronic disease model of care. Another model of care emphasizes patient self-management, with the patient as the principal caregiver supported by a well-prepared practice team with a clear division of labor. The patient is linked not only to the provider unit (the clinic) but also to community-based resources and support from the larger health care organization.

What needs to be done in the follow-up evaluations?

Follow-up evaluations are important to document disease trends and response to therapy and to assess high-risk behavior. This includes history, physical exam, and lab tests (see Tables 3-1 and 3-2). In general, the review needs to be tailored to the specific needs of the patient. Sometimes the major issue is a concurrent condition such as hepatitis C, mental illness, or substance abuse requiring resources that are best achieved with a multidisciplinary approach. For patients who are receiving ART and prophylactic drugs to prevent opportunistic infections, heavy emphasis needs to be placed on adherence and drug-related toxicities as discussed in Chapter 7 or on symptoms related to HIV complications as discussed in Chapters 8, 9, and 10. Under all circumstances, it is important to periodically assess the patient's knowledge of HIV since misconceptions are common and patients are often reluctant to ask the questions that bother them most. In virtually all encounters, it is important to emphasize prevention.

In patients at highest risk for STDs (multiple or anonymous partners, sex in conjunction with illicit drug use, patients whose partners participate in these activities, high prevalence of STDs in the area or in the patient population), STD screening is recommended more frequently than annually (see Chapter 4).

• The focus of the first visit is determined by the patient's most immediate needs.
• The initial evaluation is complex and usually requires several visits.
• An important aspect of primary care is answering the patient's questions to ensure that he or she understands the HIV disease process and treatment.
• While patients with early-stage HIV disease can be seen at 3-month intervals for routine medical evaluation, those receiving ART or with more advanced disease must be seen more frequently.
• A multidisciplinary team approach with the patient as primary caregiver is the best approach to care.