Robert H. Remien and Judith G Rabkin, HIV Center for Clinical and Behavioral
Studies Unit #15, New York State Psychiatric Institute, and College of
Physicians and Surgeons Columbia University New York, NY
[West J Med 175(5):332-335, 2001. © 2001 BMJ, Inc.]
Most patients with serious, progressive illness confront a range of
psychological challenges, including the prospect of real and anticipated
losses, worsening quality of life, the fear of physical decline and death,
and coping with uncertainty. HIV infection and/or AIDS brings additional
challenges due to the rapidly changing treatment developments and outlook.
In addition, this disease is unusual in the extent of stigma associated with
it and the fact that HIV is both infectious and potentially fatal. Because
of the risk of transmission, major and permanent changes are called for in
sexual behavior and/or management of substance use, neither of which may be
We summarize the psychological issues and challenges of living with HIV
infection, the psychiatric conditions that are commonly seen, ways in which
primary care physicians can help address these issues, and recommendations
for when they should consider involving mental health specialists and other
Primary care physicians can play an important role in helping patients
adjust to the news of a positive test result. Patients need to integrate
this new information into their existing identity. This involves questioning
assumptions about many aspects of their life, rethinking priorities and
goals, and acquiring new skills that may be necessary to accomplish
reformulated goals. An added challenge for many people who have become
recently infected is the experience of guilt that they "should have known
better." A supportive, nonjudgmental stance on the part of health care
providers is crucial.
It is useful to anticipate and expect a patient to respond to the diagnosis
of HIV infection with a wide range of feelings (see box). Expecting them,
and perhaps alerting the patient to their possible occurrence, can be
helpful. Empathy goes a long way, as does making the patient understand that
he or she is not alone and that many people have gone through this and are
currently functioning well. Referrals to a mental health professional, a
support group, a local community-based organization, and online resources at
this time are often useful.
Disclosure of HIV Status
Most people infected with HIV struggle with issues of disclosure to others,
particularly when first diagnosed. Health care providers should encourage
candor between patients and their sexual and needle-sharing partners and
discuss issues of safer behaviors in a nonpunitive manner, while
acknowledging the difficulty in both initiating and maintaining certain
behavior changes. It is important to help patients resist the desire to
either withdraw and isolate themselves, refusing to tell anyone, or the
opposite tendency—to "tell the world." Neither extreme response is adaptive.
Patients need to realize that there is time for disclosure to take place.
The potential for gaining positive support and for negative consequences
needs to be considered.
Making Treatment Decisions
Patients who take a strong interest in their medical care and participate
actively in treatment decisions are more likely to adhere to their treatment
plan and medication schedules. However, for many patients, the concept of
developing relationships with medical providers and becoming an active
member of a medical team is foreign. Primary care physicians may assume that
lack of patient discussion reflects understanding and agreement with
proposed treatments, but this may not be the case. It is helpful to
encourage patients to educate themselves about the appropriate options by
suggesting local agencies serving HIV-positive clients or Internet sites
that are informative. It also may be necessary to "license" patients to
express their opinions, concerns, disagreements, or doubts about ongoing or
proposed treatments to clear up misconceptions and engage their active
participation. One simple way of doing this is to ask patients what they
have heard about treatments, what their friends have experienced, and what
they think of HIV drug therapy.
It can be useful for the provider to acknowledge the range of opinions about
when to initiate antiretroviral treatment and which agents to select. Given
the ongoing changes in federal guidelines, this can be difficult and
confusing for patients and their providers. Patients are often resistant to
initiating antiretroviral therapy (still described as "lifetime" therapy),
particularly when they are asymptomatic. People infected with HIV are
increasingly aware of the unpleasant medication side effects and are
concerned about long-term toxic effects. Many patients have not benefited
greatly from current combination therapy because of prior sequential
monotherapy, typically recommended by physicians in the past. And many
patients are aware that as new antiretroviral medications and new
combination regimens become available, those who show the greatest treatment
response are those who remained "treatment naive" before initiation of the
new regimen. Because many patients are uncertain, ambivalent, and anxious
about initiating therapy, they should be given time to decide.
Adherence to Combination Therapy
Combination antiretroviral therapy is particularly challenging because of
its demanding dosing schedule, common adverse side effects, and the threat
of the relatively rapid development of resistance. The requirement of 95% or
better adherence to achieve virologic success is not the norm for other
diseases, where 80% adherence is usually considered adequate, and it is
difficult to achieve. Although optimal adherence needs to be facilitated,
providers need to adopt a nonjudgmental stance regarding the "normalcy" of
missing medication doses from time to time and to communicate that to
patients. Such a stance encourages patients to be open about problems they
have with adherence. Other members of the treatment team, such as a nurse or
social worker, may have more time to spend with a patient to address the
many possible barriers to adherence and to facilitate strategies to improve
and maintain optimal adherence.
Maintaining a Healthy Lifestyle
Important areas within the patient's control may influence the course of HIV
disease and, in any case, influence quality of life and psychological
well-being. These behaviors include good nutrition, exercise, control of
recreational substance use, and alterations in sexual risk behavior. Taking
charge by making improvements in these areas can enhance patients' feelings
of well-being and mastery of their lives. Primary care providers can
encourage and advocate for these positive behaviors with their patients in a
Apart from being a public health issue with respect to infection of
needle-sharing or sexual partners, continued substance use puts an
HIV-positive person at risk of exposure to new infections, such as hepatitis
C. Hepatitis C is becoming more widespread, and it may interfere with
antiretroviral drug use because of liver damage. Furthermore, heavy drug or
alcohol use is likely to interfere with medication adherence and medical
care in general.
In the absence of consistent or clear evidence that mild to moderate
substance use is significantly detrimental to the course of HIV illness,
patients need not be told to abstain entirely. However, when the frequency,
amount, and context of the substance use are judged to be mal-adaptive or
problematic for a given patient, counseling and then referral for treatment
of substance use may be indicated.
Sex and Relationships
Typically when someone is first diagnosed with HIV infection or AIDS, there
is a significant decline in sexual interest and activity. Over time,
however, most people will want to resume sexual activity. The process of
reengaging in sexual activity and romantic relationships can be difficult
because of anxiety over disclosure and fear of rejection from potential
partners, fear of infecting others, and negotiating safer sex.
On the other hand, combination antiretroviral therapy has introduced a new
dynamic into the epidemiologic features of HIV transmission and,
consequently, to prevention efforts. A false sense of security may arise
because of a belief in reduced infectivity associated with reduced or
"undetectable" viral load.[2,3,4] Many patients and their HIV-negative
partners think that "undetectable" means "absent." Also, many patients
ignore the possibility that they can transmit drug-resistant strains of HIV
to others. An increasing number of newly infected people are being found to
have HIV strains that show resistance to at least one class of
antiretroviral drugs. To clarify the meaning of undetectable viral load,
phrases such as "below the threshold of detectability" or "fewer copies than
the test can detect" may be used instead.
Assessing Psychiatric Status
During specific times in the course of HIV disease, patients are
particularly vulnerable to acute distress, such as when first notified of a
positive HIV status, the initial onset of physical symptoms, a sudden
decline in the number of CD4 cells, the first opportunistic infection, or
the first hospitalization. Continuing to maintain hope in the context of
illness progression is a great psychological challenge for patients and care
providers. Normal levels of distress in the context of stressful events need
to be distinguished from psychiatric conditions deserving special attention.
Depression is the most common psychiatric disorder observed among
HIV-positive patients. Whereas early reports based on clinical observation
or medical record reviews indicated high rates of distress and depressive
symptoms among those infected with HIV or who had AIDS,[6,7] later studies
that used structured psychiatric evaluations and community samples with
HIV-negative comparison groups showed rates of psychiatric disorder to be
largely equivalent between HIV-positive and -negative people.[8,9,10,11,12]
The picture is somewhat different in unselected samples of HIV-positive
patients with whom briefer depression screens are used. Recently, Bing and
colleagues assessed a national probability sample of nearly 3,000 adults
receiving care for HIV infection and found that more than a third screened
positive for clinical depression, the most common disorder identified.
Half reported the use of an illicit drug in the past year. Drug dependence
was associated with screening positive for a psychiatric disorder.
The message for primary care providers is that psychiatric distress is
common among HIV-positive patients. Psychiatric illness in the context of
HIV infection can contribute to diminished health outcomes, increased
substance use, poor treatment adherence, increased risky sexual behavior, or
other maladaptive behaviors. It is, therefore, advisable to screen for the
presence of depression and drug and alcohol abuse and to treat or refer
these patients to specialists when problems are suspected. Depression,
substance use disorders, and cognitive impairment are the most commonly
observed neuropsychiatric disorders in patients infected with HIV, although
any psychiatric disorder may be encountered, as in the general population.
Patients with serious and persistent psychiatric disorders require
specialist evaluation and treatment.
Assessment and Treatment of Depression
Patients are often reluctant to mention mood problems to their physicians.
Also, depressive symptoms, such as fatigue or loss of appetite, can be
attributable to HIV infection or medications. Physicians should ask about
feelings of distress if patients appear to be sad, if their mood seems
altered, if they seem to be spending most of their time at home alone (in
the absence of medical problems requiring this), or if they seem isolated.
Simple queries such as, "Do you feel depressed more days than not, most of
the day, for a couple of weeks at a time?" can be useful.
Several clinician and patient rating scales developed for use in primary
care settings can detect the presence of depression, such as the Primary
Care Evaluation of Mental Disorders (PRIME-MD) and the Patient Health
Questionnaire (PHQ) (available from Dr Spitzer at firstname.lastname@example.org).
Primary care physicians can successfully treat patients who are clearly
depressed by using standard antidepressant medication. Clinical trials have
demonstrated the efficacy of medications such as fluoxetine hydrochloride
and paroxetine in treating depressed patients who are
HIV-positive,[16,17,18] and no clinically significant interactions with
antiretroviral medications have been reported. If treating patients on their
own, primary care physicians may want to refer those who do not respond at
all in about 8 weeks to a psychiatrist for consultation or treatment. Such
patients may require dose increases if there has been a partial response,
augmentation with another medication, or a switch to another antidepressant
Not all depressed patients need or want antidepressant medication. For those
with mild but persistent depression, support groups or counseling (or both)
may be helpful. For others, structured forms of psychotherapy may alleviate
distress. Both cognitive behavioral therapy and interpersonal therapy have
been shown to alleviate depression in HIV-positive patients.
The choice of treatment for depression is most usefully determined by any
past history of treatment, the patient's preferences, and available options
including insurance coverage. It should be made clear to patients that
depression is not the norm among HIV-positive people and that treatment is
available and generally effective. The central task of primary care
physicians is to identify the presence, duration, and severity of distress
and depression and then to provide treatment or refer patients to acceptable
and accessible therapeutic resources.
Emotional responses to testing HIV-positive
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Thanks to medscape: www.medscape.com.