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)

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, 2023f).

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).

NEUROPSYCHIATRIC EFFECTS OF HIV/AIDS

HIV itself increases the risk of neuropsychiatric conditions because it causes major inflammation within the body. The entire brain, including the lining, becomes inflamed as a result of the body’s immune response, causing irritation and swelling of brain tissue and/or blood vessels, resulting in nontraumatic brain damage over the long term. Having brain damage such as this is a known risk factor for the development of a neuropsychiatric condition.

Because HIV affects the immune system, the person also has an increased risk for other infections that can affect the brain and nervous system and lead to changes in behavior and functioning.

Starting antiretroviral therapy can also affect a person’s mental health in different ways. Some antiretroviral medications have been known to cause symptoms of depression, anxiety, and sleep disturbance and may make some mental health conditions worse (MHA, 2023; Pieper & Teisman, 2023).

HIV-ASSOCIATED NEUROCOGNITIVE DISORDERS (HAND)

Changes in attention, memory, concentration, and motor skills are common among HIV-infected individuals. When such changes are clearly attributable to HIV infection, they are classified as HIV-associated neurocognitive disorders (HAND). Depending on the severity and impact on daily functioning, cognitive deficits can be further classified into three conditions:

Asymptomatic neurocognitive impairment (ANI)
HIV-associated mild neurocognitive disorder (MND)
HIV-associated dementia (HAD)

The widespread use of combination antiretroviral therapy has been associated with a decrease in the prevalence of more severe neurocognitive deficit, such as HAD, but milder cognitive deficits without alternative explanation remain common, even among patients with viral suppression.

HAND is characterized by the subacute onset of cognitive deficits, central motor abnormalities, and behavioral changes. Risk factors for HAND include a low nadir CD4 cell count, age, and other comorbidities, such as cardiovascular and metabolic disease.

The main cognitive deficits that have been reported in milder presentations of HAND include problems with attention and working memory, executive functioning, and speed of informational processing. The onset and course are generally more slow-moving, and deficits may remain stable or apparently unchanged for years.

HAD is related to the effect of HIV on subcortical and deep grey matter structures and occurs mainly in patients who are untreated with advanced HIV infection. Unlike other neurodegenerative diseases (e.g., Alzheimer’s disease), deficits occurring in HAD may come and go over time. Onset of impairment is most often subacute, and cerebral atrophy is often evidenced on brain imaging.

Risk factors for HAD include high serum or cerebrospinal fluid HIV viral load, low education level, advanced age, anemia, illicit drug use, and female gender. The dementia is characterized by subcortical dysfunction with:

Attention-concentration impairment
Depressive symptoms
Impaired psychomotor speed and precision

Patients with HAD may also have changes in mood that can progress to psychosis with paranoid ideation and hallucinations, and some may develop mania (Pieper & Teisman, 2023).

Issues Affecting Special Populations

HIV/AIDS takes a heavy toll on people of all ethnicities, genders, ages, and income levels. However, some populations have been uniquely affected by the epidemic.

SEXUAL MINORITIES

The high prevalence of mental health problems among sexual minorities has been attributed to sexual minority stress. Minority stress may contribute to identity conflict and increase condomless anal sex by isolating men who have sex with men, transgender women, and gender nonbinary people of color (Sarno et al., 2022).

PEOPLE WHO INJECT DRUGS

People with HIV who use injection drugs are a population with extensive psychiatric, psychological, and medical comorbidities, the most significant being major depression. Depression is associated with worsening of addictions and resistance to treatment. Patients who are depressed patients often find it difficult to engage in, invest in, and sustain treatment.

Because drug use is criminalized, people who use drugs often live or take drugs in underground, hidden places, making it harder for services to reach them. Healthcare workers, police, and other law enforcement agents are often discriminatory toward people who use drugs, which prevents them from wanting to access HIV services (Be in the KNOW, 2023b).

ADOLESCENTS WITH PERINATAL HIV INFECTION

The prevalence of mental health disorders in youth with perinatally acquired HIV is high, with nearly 70% meeting the criteria for a psychiatric disorder at some point in their lives. The most common conditions include anxiety and behavioral disorders, mood disorders (including depression), and attention deficit hyperactivity disorder, all of which complicate adherence to treatment and retention in care. The prevalence of attempted suicide is also notably higher in adolescents with HIV compared to others.

Adolescents with perinatally acquired HIV are also at risk for neurocognitive impairment and substance use disorders, which also can interfere with medication adherence.

Challenges that affect the treatment of adolescents with perinatally acquired HIV include extensive drug resistance, complex regimens, the long-term consequences of HIV and antiretroviral exposure, the developmental transition to adulthood, and psychosocial factors.

Assessment of antiretroviral adherence in adolescents with HIV can be challenging, with discordance between self-report and other adherence measures, such as viral load and therapeutic or cumulative drug levels. This should involve immediate and open discussions with the adolescent and their caregiver(s) (HIV.gov, 2023e).

End-of-Life Issues

Because of the advancement of effective antiretroviral therapy, the increased life expectancy for persons diagnosed with HIV is contributing to a rapidly aging HIV-infected population with a high prevalence of comorbidities. These comorbidities, and not HIV, are most often the cause of death for people in this population.

For patients with HIV/AIDS who are approaching the end of life, creating advance directives that outline their choices and preferences for care can be difficult. One of the most important decisions is whether and when to discontinue ART. This is particularly stressful for both the patient and family because it may be seen as “giving up.”

Individuals who are dying from a condition besides AIDS must consider whether or not to continue to receive antiretroviral treatment. Reasons for continuing ART may include:

Discontinuance will lead to uncontrolled viremia, which could contribute to symptom burden.
ART may help sustain cognitive functioning, as system viral load does not always correlate with central nervous system viral load.

Reasons for considering discontinuation of ART may include:

Continuing medications might contribute to anxiety for patients who have trouble taking medication, cause confusion about goals, and distract from advanced care planning.
Patients may experience “pill burden” and potential drug-drug interactions with common palliative care medication. For example, some ART medications increase levels of some opioids (e.g., oxycodone) while decreasing the levels of other opioids (e.g., methadone).

With continued treatment, the patient may choose palliative care. If treatment for HIV is to be discontinued, the choice for hospice care during the last six months of life recognizes that treatment is no longer of benefit and the disease will run its course (Pahuja et al., 2023).