PATIENT CARE MANAGEMENT

It is the role of primary healthcare providers to oversee and coordinate the multidisciplinary services necessary for the best health outcomes for HIV-infected patients. Following initial evaluation, follow-up visits depend on the patient’s stage of HIV infection, the type of antiretroviral therapy the patient is taking, other comorbidities, and complications.

Once started on ART, the patient makes frequent healthcare visits to evaluate the efficacy and tolerability of the selected regimen. Once the viral load has been suppressed, however, less frequent monitoring is appropriate. Most patients with HIV who are on an effective ART regimen die from conditions other than AIDS, and they have a higher risk of certain medical conditions that might be associated with HIV infection itself, risk factors prevalent in those with HIV, or the use of ART. Appropriate management requires an awareness about and evaluation of these possible complications

Case Management

There are many people with HIV who do not start or stay in care to control their HIV. A recent estimate found that only 66% of those diagnosed with HIV connected with a doctor for care and only 50% stayed in care.

Case managers are professionals who connect patients with a range of social services and assist with any challenges the person may have that keeps them from getting into and remaining in care. A case manager assesses what specific services are required and then assists the person in accessing them. An HIV case manager may assist with:

• Setting up medical and dental appointments
• Finding affordable health insurance or government insurance
• Applying for financial aid to help cover living expenses, such as Social Security or Temporary Assistance to Needy Families (TANF)
• Applying for housing, finding an apartment, and paying for the first months’ rent
• Obtaining short-term help to pay for utilities or cell phone services
• Finding free transportation to clinic appointments or free bus/transit passes
• Obtaining free groceries at a local food bank
• Obtaining counseling for mental health conditions or treatment for substance abuse
• Applying for free HIV medications through the AIDS Drug Assistance Program (ADAP)
• Managing pregnancy, prenatal care, delivery, and infant care
• Finding HIV support groups
• Obtaining a referral to a lawyer for legal assistance
  (Felson, 2022)

In Washington State, the Department of Health contracts with agencies throughout the state to help connect people living with HIV to health services and resources. An HIV medical case manager assesses the person’s needs and support system, and assists in accessing services so as to improve and maintain health.

The Washington State Department of Health (DOH) is responsible for dispersing funds to local government and nonprofit organizations through the state as part of the federal Ryan White HIV/AIDS Program. DOH coordinates services that ensure people living with HIV have access to case management assistance and other supportive services (WA DOH, 2021c).

Management of Cardiovascular Risk

Cardiovascular disease is a significant cause of death among people with HIV. It is important that clinicians identify and initiate appropriate preventive interventions for risk factors.

Assessment for cardiovascular risk includes:

• Blood pressures at baseline and annually
• Random or fasting glucose and/or hemoglobin A1c at baseline, 1–3 months following ART initiation or modification, and then annually
• Fasting lipid profile at baseline and 1–3 months following ART initiation or modification, then every 6–12 months
• Weight assessment at baseline and follow-up visits
• Tobacco use assessment at baseline and annually

Management of cardiovascular risk includes lifestyle modification, changing ART regimen if appropriate, treatment with lipid-lowering agents, weight loss through diet and exercise, and treatment with oral hypoglycemic drugs or insulin. Tobacco users appear to lose more life-years to smoking than to HIV, and smoking cessation is recommended to prevent chronic lung disease including lung cancer, pulmonary hypertension, and pulmonary fibrosis (Pollack & Libman, 2023; Achhra et al., 2021).

Management of Premature Bone Loss

HIV infection and some HIV medications may increase the risk of osteoporosis in people living with HIV. Osteopenia, osteoporosis, and fracture are of concern, and bone densitometry screening is recommended in postmenopausal women and men ages 50 and older; it is repeated dependent on extent of bone-density loss. Management includes ruling out secondary causes, initiating lifestyle changes, calcium and vitamin D supplementation, and bisphosphonate therapy (Libman & Pollack, 2021).

Management of Cancer and Precancerous Lesions

Lung, hepatic, and anal cancers occur at younger ages in adults with HIV than in those without. Screening for cancers includes:

• Pap test for cervical cancer detection at baseline and annually in all women
• Colonoscopy at age 45 in asymptomatic patients at average risk and earlier in those with strong family history of colon cancer (subsequent testing frequency depends on findings on baseline exam)
• Mammography every other year or annually in women ages 50–74
• Prostate-specific antigen (PSA) testing for men ages 55–69
• Low-dose helical chest CT for adults ages 50–80 who are at risk of lung cancer due to smoking

Management of malignancies include chemotherapy, immunotherapy, targeted therapy, radiation therapy, and surgery. However, it is often difficult to treat cancer in persons who have advanced to the stage of AIDS due to the increased risk for infections and lowered immune function caused by HIV (Pollack & Libman, 2023; Cancer.Net, 2021).

Management of Neuropsychiatric Disorders

Assessing for neuropsychiatric disorders includes screening for depression and cognitive deficits at baseline and annually thereafter, as well as inquiring about ongoing substance use. Close assessment for the presence of symptoms of neurocognitive impairment is done during clinical visits to identify those affected by HIV-associated neurocognitive disorder (HAND).

Management of neuropsychiatric disorders requires aggressive antiretroviral treatment and close monitoring in order to successfully manage HIV infection. Close monitoring is recommended also for patients with pre-existing psychiatric disorders who are taking specific ART medications. Antiretroviral treatment reduces HIV replication in the blood and brain, leading to a reduction in monocytes, which then results in the decreased production of neurotoxins and neuroinflammation.

In addition, medications with strong anticholinergic side effects, such as sedating antihistamines, barbiturates, narcotics, benzodiazepines, gastrointestinal and urinary antispasmodics, CNS stimulants, muscle relaxants, and tricyclic antidepressants, should be avoided. Antipsychotics should be used with caution (Clifford, 2023; Cooley et al., 2022).

Management of Medication Toxicity

Assessing for medication toxicity includes:

• CBC with differential at baseline and every 3–6 months while monitoring CD4+ count and once every year thereafter
• BUN and creatinine at baseline, 2–8 weeks after ART initiation, and then every 6 months
• Urinalysis at baseline, after ART initiation or modification, and then every 6–12 months depending on the ART regimen
• ALT, AST, and total bilirubin at baseline and 2–8 weeks after ART initiation, then every 6 months

Clinicians who provide care to persons with HIV must understand the basic toxicity profile of antiretroviral medications and keep in mind that potential adverse effects of most antiretroviral medications are less toxic than the effects of untreated HIV. Medication-related adverse effects may manifest in overt symptoms or initially only as laboratory abnormalities. Evaluation includes taking a detailed history, including a timeline of symptoms, review of concomitant medications (both prescribed and nonprescribed), and consideration of alternative causes of symptoms due to a new or existing comorbidity or medication. In some instances when no other cause is likely, change of antiretroviral drug may be necessary (HIV.gov, 2023e; Libman & Pollack, 2021).

Managing Coexisting Infections

Patients should be regularly screened for infections, including:

• Tuberculosis testing (TST or IGRA) at baseline and annually for those at risk unless there is a history of a prior positive test, with a chest X-ray to rule out active TB in patients with a positive screening test
• Syphilis serology at baseline and annually for sexually active persons
• Chlamydia and gonorrhea screening at baseline and annually for sexually active persons
• Trichomonas baseline for all women and annually for sexually active women
• Hepatitis A and hepatitis B virus serologies at baseline, along with vaccinations in persons not immune
• Hepatitis C virus serology, with reflex viral level, for positive result at baseline and annually in those at risk (e.g., persons who inject drugs, men who have sex with men, transgender women)
• Dilated fundoscopic exam annually in patients with CD4 cell count less than 50/microL, as HIV-1 infected patients are prone to develop ocular opportunistic infections, including:
• Cytomegalovirus (CMV) retinitis
• Cryptococcosis
• Toxoplasmosis
• Tuberculosis

Taking HIV medicine is the best way to prevent getting infections, and patients should be counseled in strategies to prevent them, including immunization. There are many medications to treat HIV-related infections, including antivirals, antibiotics, and antifungal drugs. Once an infection is successfully treated, a person may continue to use the same medication or an additional medication to prevent the opportunistic infection from returning (Pollack & Libman, 2023, HIV.gov, 2023g).

TUBERCULOSIS

Worldwide, tuberculosis (TB) is one of the leading causes of death among people with HIV. Treatment of tuberculosis infection in patients with HIV is associated with two important benefits: reducing risk for progression to active tuberculosis (which is greater among individuals with HIV than those without HIV) and reducing TB transmission.

Once it enters the body, TB can be inactive (latent) or active TB disease. HIV-infected patients with advanced immunosuppression are at increased risk of extrapulmonary TB and disseminated (miliary) TB. Miliary TB can arise as a result of progressive primary infection or via reactivation of a latent focus with subsequent spread through the blood or lymph system. TB usually affects the lungs but can also affect any part of the body, including the kidneys, spine, or brain. If not treated, TB disease can result in death (Bernardo, 2023).

The clinical manifestations of tuberculosis of patients with HIV infection are influenced by the degree of immunosuppression. People with latent infection do not have symptoms, and TB disease in other parts of the body may produce a variety of symptoms related to the site of infection. In early HIV, the clinical presentation of TB disease affecting the lungs is similar to the presentation in those who are not HIV-infected, and includes the following:

• Persistent cough
• Hemoptysis
• Chest pain
• Weakness or fatigue
• Loss of appetite
• Weight loss
• Chills
• Fever
• Night sweats

Persons with HIV who are infected with TB are treated for both diseases. TB medication choice and length of treatment depend on whether a person has latent or active TB disease. TB medications are used for preventing latent TB from progressing to active TB as well as for treating the disease itself. Taking certain HIV and TB medicines at the same time can lead to drug-drug interactions and side effects, and people being treated for both diseases are carefully monitored.

Recommended treatment for nonpregnant adults with HIV is initiated in individuals with:

• Recent contact with a person who has active TB disease
• No signs or symptoms of active TB and clinical suspicion for prior TB, which can include fibrotic disease on chest X-ray consistent with healed TB and no documented history of adequate TB treatment
• Positive tuberculin skin test or interferon-gamma release assay in the absence of active TB

Patients must be evaluated for active TB disease prior to initiation of treatment to avoid monotherapy and risk of TB drug resistance. Treatment decisions are guided by the patient’s current ART regimen, with careful attention to drug interactions (Menzies, 2022).

The CDC-recommended treatment for TB involves 12 weeks of once-weekly isoniazid and rifapentine (3HP), either self-administered or by directly observed therapy, for persons with latent TB and HIV who are taking antiretroviral medications with acceptable drug-drug interactions with rifapentine. Another option is four months of daily rifampin for those who are taking certain combinations of antiretroviral therapy. In situations where rifampin cannot be used, rifabutin may be substituted. For those taking antiretroviral medications with clinically significant drug interactions with once-weekly rifapentine or daily rifampin, one month of daily isoniazid is an alternative therapy (CDC, 2023d).

HIV AND SEXUALLY TRANSMITTED INFECTIONS

HIV is a sexually transmitted disease (STD). Chlamydia, gonorrhea, human papillomavirus (HPV) infection, and syphilis are some examples of other STDs. Having an STD can make it easier to become infected with HIV because STDs can result in sores or breaks in the skin, which then makes it easier for HIV to enter the body. Being infected with HIV and another STD may increase the risk of HIV transmission.

Viruses such as genital herpes, human papillomavirus, and cytomegalovirus, like HIV, cause STDs that cannot be cured. People with a sexually transmitted infection (STI) caused by a virus will be infected for life and will always be at risk of infecting their sexual partners. Treatment for these viruses, however, can significantly reduce the risk of passing on the infection and can reduce or eliminate symptoms. STDs caused by bacteria, yeast, or parasites can be cured using antibiotics, most often orally. However, at times they may be injected or applied directly to the affected area.

In some cases, people with STIs have no symptoms. Over time, many symptoms may improve on their own. However, it is possible for a person with an asymptomatic STI to infect others without knowing it.

Some common STI signs and symptoms include:

• Unusual discharge from the penis or vagina
• Sores or warts on the genital area
• Painful or frequent urination
• Itching and redness in the genital area
• Blisters or sores in or around the mouth
• Abnormal vaginal odor
• Anal itching, soreness, or bleeding
• Abdominal pain
• Fever

STDs caused by bacteria or parasites can be effectively cured with medications, but there is no cure for those STDs caused by viruses. Treatment, however, can relieve or eliminate symptoms and help keep the STD under control. Treatment also reduces the risk of transmitting the infection to a partner. Untreated STDs may lead to serious complications. For example, untreated gonorrhea in women can cause pelvic inflammatory disease, which may lead to infertility (HIV.gov, 2021a).

VIRAL HEPATITIS

Hepatitis A (HAV) is very contagious. It is a virus found in the stool and blood of people who are infected. Hepatitis A virus immunoglobulin G antibody measurement is done for all individuals with HIV, and administration of the two-dose HAV vaccines series is recommended for all susceptible patients over 1 year old. Those with an inadequate antibody response receive a repeat vaccine series.

Because hepatitis B (HBV) and hepatitis C (HCV) infections are transmitted in the same manner as HIV, people with HIV infection in the United States are often also affected by chronic viral hepatitis, and individuals with HIV are at increased risk of chronic infection, which is the leading cause of chronic liver disease worldwide. Hepatitis B and C are both spread:

• By sharing needles, syringes, and other injection equipment
• Sexually:
• HBV more likely than HCV
• More likely among gay and bisexual men who are living with HIV
• Mother to child:
• Since HIV/HCV coinfection increases the risk of passing on HCV transmission

Everyone with HIV should be tested for HBV and HCV when they are first diagnosed with HIV. Hepatitis B surface antigen (HBsAG) testing is performed and treatment begun immediately for all people with HIV/HBV coinfection, including pregnant women, regardless of CD4 count and HBV DNA level. Antiretroviral treatment includes drugs active against both HIV and HBV, and treatment must be continued indefinitely.

The consequences of HCV infection in patients with HIV are significant and include accelerated liver disease progression, high rates of end-stage liver disease, and shortened lifespan after hepatic decompensation among those with more advanced immunodeficiency. Even with the availability of potent antiretroviral therapy, end-stage liver disease remains a major cause of death among patients with HIV who have HCV coinfection.

Hepatitis C antibody screening for HCV is recommended. Antiretroviral management issues in patients with HIV/HCV coinfection include the timing of ART therapy or switch and the use of appropriate antiretroviral regimens that do not have serious drug interactions with HCV antiviral agents. Antiretroviral treatment interruptions to allow for HCV antiviral therapy is not recommended (Rockstroh, 2023; HIV.gov, 2023f; Libman & Pollack, 2021).

Hepatitis Treatment

HIV/HBV and HIV/HCV coinfections can be effectively treated in most people, but treatment can be complex. When patients with concomitant HCV are initiated on ART, close laboratory follow-up is necessary, and patients should be educated about symptoms that may suggest liver injury, such as jaundice or darkening of urine, right-upper-quadrant pain, nausea, anorexia, pruritus, and fatigue.

Hepatitis B treatment can delay or limit liver damage by suppressing the virus. Like treatment for HIV, hepatitis B treatment may need to be taken for the patient’s lifetime. Some HIV medications can also treat hepatitis B.

Hepatitis C is a curable disease. Left untreated, however, it can cause severe liver damage, liver cancer, or death. Newer treatments for hepatitis C approved in recent years have few side effects and do not require injection. These treatments can cure more than 97% of people, including those living with HIV, with just 8–12 weeks of oral therapy in pill form (HIV.gov, 2022d; Pollack & Libman, 2023).

Hepatitis Prevention

Hepatitis A and hepatitis B vaccines are the best way to prevent infection. Currently there is no vaccine for HCV, and the best way to prevent it is by always using new sterile needles or syringes for injecting drugs and by avoiding reuse or sharing of needles or other drug preparation equipment (HIV.gov, 2022d).

Ongoing Management of HIV Symptoms

Common symptoms among people living with HIV can include acute and/or chronic pain, as well as fatigue.

ACUTE/CHRONIC PAIN

Chronic pain affects 25%–85% of individuals with HIV infections. There is also much evidence that chronic pain is often underdiagnosed and undertreated among this population.

People with HIV can experience a variety of types of pain from a variety of causes. The virus itself and the immune response to it can lead to inflammatory responses causing pain. Secondary complications of poorly managed HIV, such as cancers and opportunistic infections, are also associated with pain. Older HIV medications themselves tend to be neurotoxic and associated with nerve damage that can lead to chronic pain. Even those patients who are managing their infection with ART and have higher CD4 counts can experience pain.

The most commonly reported pain syndromes include painful sensory peripheral neuropathy, headache, oral and pharyngeal pain, abdominal pain, chest pain, anorectal pain, joint and muscle pain, as well as painful dermatologic conditions and pain due to extensive Kaposi’s sarcoma.

Women with HIV appear to experience pain more frequently than men and report somewhat higher levels of pain intensity. This may partly be due to the fact that HIV-positive women are twice as likely as men to be undertreated for their pain (Pahuja et al., 2023).

Research also suggests women are more sensitive to pain than men and are more likely to express it, so their pain is often seen as an overreaction rather than a reality. Research also shows that due to provider and societal bias, men in chronic pain tend to be regarded as “stoic” while women are more likely to be considered “emotional” and “hysterical” (Latifi, 2021).

Children with HIV can also experience pain due to conditions such as meningitis and sinusitis, otitis media, cellulitis and abscesses, severe candida dermatitis, dental caries, intestinal infections, hepatosplenomegaly, oral and esophageal candidiasis, and spasticity associated with encephalopathy causing painful muscle spasms.

Because of the high prevalence of chronic pain and the evidence that links chronic pain with outcomes, individuals with HIV infection are routinely and frequently asked about pain. As with other patients with chronic pain, an evidence-based diagnostic evaluation is performed.

Opioids are not used as first-line treatment options for chronic pain. Generally, the approach to chronic pain management includes initial psychoeducation about the nature of pain as a chronic condition and the significance of multimodal therapies, such as physical therapy, cognitive behavioral therapy, or supportive psychotherapy, and setting expectations that the timeline for improvement is not days or weeks but instead months or years (Pahuja et al., 2023).

FATIGUE

Fatigue is a common, often persistent symptom among individuals with HIV infection. Fatigue interferes with physical, social, and mental functioning, and may also interfere with adherence to ART.

Physiologic factors associated with fatigue or the severity of fatigue include liver disease, hypothyroidism, hypogonadism, anemia, and duration of HIV infection. Fatigue can also be caused by the HIV itself, and it is known that the body mounts a strong immune response against the virus, which can use up a lot of energy.

Psychological and social factors associated with fatigue include stressful life events, depression, anxiety, and posttraumatic stress disorder.

For individuals with HIV, the approach to fatigue is the same as in the general population. This includes a search for medical or psychiatric causes (especially hypogonadism), medication review, inquiry regarding the patient’s sleep patterns, and treatment of the underlying cause when present. Testosterone may help hypogonadal men with fatigue. Moderate exercise is a reasonable recommendation also if patients are able to tolerate it (Pahuja et al., 2023).

NUTRITION AND WEIGHT LOSS

Weight loss of more than 5% in persons with HIV infection is associated with faster disease progression, impaired functional status, and increased mortality. It is affected by factors including the HIV disease stage, nutritional status, and micronutrient deficiencies.

Starting nutritional counseling and education shortly after HIV diagnosis is important, since good nutrition has been shown to increase resistance to infection and disease and improve energy. Severe malnutrition in HIV-infected patients is recognized as “wasting syndrome,” defined by the CDC as a body-weight loss equal to or greater than 10%, with associated fatigue, fever, and diarrhea unexplained by another other cause.

Nutritional assessment includes:

• Measurement of weight, noting weight change, height, body mass index (BMI), and mid-upper-arm circumference
• Appetite, difficulty swallowing, nausea, diarrhea, and effects of drug-food interaction
• Household food security

Management includes:

• Supplementary feeding in those who are mild to moderately malnourished, regardless of HIV status
• Therapeutic food for severely malnourished adults
• Increased energy intake by 10% in patients with asymptomatic HIV infection
• Multivitamin supplements

In those who are in the early stages of AIDS, weight gain and/or maintenance has been shown to be possible with a high-energy, high-protein diet, including at least one oral liquid nutrition supplement in conjunction with nutrition counseling.

Pharmacologic therapy can include the anabolic replacement with synthetic testosterone, which has been shown to increase lean body mass and improve quality of life among androgen-deficit men. Megestrol, a synthetic oral progestin approved by the FDA for treatment of anorexia, cachexia, or unexplained weight loss, has been shown to stimulate appetite and nonfluid weight gain in patients with HIV/AIDS (Qureshi, 2021).

Alternative and Complementary HIV Therapies

In addition to medical care, many patients with HIV infection use alternative and/or complementary therapies to improve their immune systems and to address symptoms and/or side effects from the medications taken to treat HIV. Many people report positive results from using alternative therapies; however, there is not enough research on the effectiveness of many such therapies.

Some mind-body practices have been demonstrated to be effective in patients with HIV. These include:

• Massage, to reduce pain
• Yoga, to reduce pain and improve feelings of overall health, reduce anxiety and depression, and improve levels of CD4 cells
• Acupuncture, to help with nausea and other treatment side effects
• Meditation and other mindfulness therapies, to help reduce anxiety and improve the ability to cope with stress

Herbal and dietary supplements have also been shown effective when used with caution. These include:

• FDA-approved cannabis and cannabinoids, for control of nausea, appetite loss, and weight loss
• Evening primrose, to boost the effects of certain HIV medications
• Milk thistle, to improve liver function
  (VA, 2022)