Extended Delay in Seeking HIV Treatment Creates Medical Dilemma

By Barbara Biedrzycki, RN, MSN, AOCN, CRNP

Summary—A recently published study found the average delay is 24 months for a person with a positive human immunodeficiency virus (HIV) test to seek initial primary HIV care.1 This delay in initiating antiretroviral therapy permits HIV to replicate more than a trillion times during that two-year span. The infected client becomes more immunodysfunctional, morbidity and mortality increase, and the delay propagates public health concerns about increased HIV transmission. Clinicians need to be sure clients are well-informed and understand HIV risks. Each clinician must develop communication skills and promote post-HIV-test counseling following given guidelines and make it standard practice to provide HIV test results in person.

Researchers have learned that patients with HIV infection presenting for initial medical care had CD4 lymphocyte counts ranging from 0.3-0.45 x 109/liter. That count, which indicates immune system dysfunction, usually occurs years after seroconversion.

HIV infection replicates at an estimated 2 billion virions every day, and a delay in seeking medical care for several years after seroconversion results in the "trillion virion delay." Research at two urban northeastern U.S. HIV care facilities found multiple variables associated with an increase time delay in seeking initial HIV medical care. Two of the most significant variables were clients who were:

• unaware of HIV risk at testing;

• and not told of HIV status in person.

Both provide an opportunity for advanced practice nurses to make a valuable contribution to the war on HIV.

In the study, recently published in the Archives of Internal Medicine, researchers sought to quantify the time between HIV testing and the patient’s presentation to primary care and to discover the elusive variables associated with the delay. They also explored the dependent variable in time delay with independent variables of:

• demographics;

• drug and alcohol use;

• social support;

• victimization history;

• sexual beliefs and practices;

• medical and psychiatric issues;

• and HIV risk awareness.

Included in the demographic variables were:

• education;

• employment;

• income;

• health insurance;

• homelessness;

• time in current residence;

• and prior time in jail.

Study Parameters and Findings

One hundred eighty-nine people participated in this study consisting of a 60- to 90-minute interview in English, Spanish, or Haitian Creole. All research participants were from two urban northeastern U.S. HIV care sites. Their referring locations varied greatly, adding to the diversity of the group. They included:

• inpatient hospital services;

• outpatient centers;

• self-referrals;

• correctional institutions;

• community health centers;

• and urgent and emergency care facilities.

The average delay from HIV testing to initial presentation for primary HIV care was 24 months, with 39% (74) delaying treatment more than one year, 32% (35) more than two years, and 18% (61) more than five years. As the researchers indicated, an average delay of 24 months results in more than 1 trillion replications of HIV.

Such a delay potentially results in increased morbidity and mortality because it prevents initiation of antiretroviral therapy, prophylactic treatment to prevent opportunistic infections, opportunities to participate in clinical trials, and access to supportive services. It also may pose a public health threat because antiretroviral therapy is indicated to decrease vertical transmission of HIV from pregnant mother to children, and it is hypothesized to reduce infectivity via sexual transmission.2,3

Multiple variables were associated with an increased delay in seeking primary HIV care as determined by the statistical tests bivariate analysis and multiple regression analysis. (See Table 1, p. 35.)

Variables associated with the longest delays in seeking initial HIV medical care are that the client:

• was not told HIV-positive status in person (30.4 months mean additional delay);

• had history of injection drug use (19.2 months mean additional delay);

• was not aware of HIV risk at time of testing (18 months mean additional delay);

• and did not having a living mother (13.9 months mean additional delay).

To conceptualize their findings, the researchers classified significant variables into three major characteristics: history of substance abuse (intravenous drug and/or alcohol use), poor social support (not having a spouse, partner, or living mother), and being unaware of HIV risk status at time of testing. Identifying substance abuse as a barrier in seeking not only HIV care, but any medical care, prompted extensive outreach programs targeting this population. Other indicators of inadequate support systems (lack of father, children, close friends, or close relationships with mother or children; spending most of free time alone) were not statistically significant. Patients without such support who presented for HIV testing received extra encouragement for post-test care.

Table 1 
Statistically Significant Variables Related to Increased Meantime Delay from HIV Testing to Initial Presentation for Treatment 
• male sex*  • no living mother** 
• in residence <6 months • unaware of HIV status at testing 
• prior time in jail* • interaction of sex & CAGE** 
• no spouse or partner* • injection drug use***
• score on 4-question alcohol screening questionnaire (CAGE) >= 2* • notified of HIV status by mail or telephone
* significant at p<0.5, bivariate analysis 
** significant at p<.05 multiple regression analysis>
*** significant at p<0.5, bivariate and multiple regression analysis 

Source: Samet JH, Freedberg KA, Stein MD, et al. Trillion virion delay. Arch Int Med 1998;158:734-740.

What Part Does Post-Test HIV Counseling Play?

Wouldn’t post-test HIV counseling facilitate timely initiation of antiretroviral therapy? In theory, post-test counseling should provide opportunities for HIV-positive clients to receive prompt care. In actuality, the recommended practice varies tremendously because there are no protocols.

Until specific formal requirements are established, the content of post-test HIV counseling depends on the discretion and counseling skills of health care providers. (See counseling guidelines established by the Centers for Disease Control and Prevention, p. 34.) In addition, not everyone is comfortable with discussing HIV risks. Seventeen family physicians and general internists participated in a research study to identify barriers to and facilitators of comprehensive HIV risk evaluation in primary care settings.4 Through qualitative thematic and sequential analysis of videotaped patient-physician encounters with 26 patients who indicated a concern about or risk of HIV infection, researchers discovered several key components to effective communication about HIV risks. This qualitative research identified communication barriers when the physician:

• changed the topic;

• used fragmented or vague language;

• provided an abrupt or decontextualized opening;

• did not pursue the patients’ cues;

• avoided eye contact;

• and ignored a stated concern.

Only physicians were chosen as subjects in this convenience sample. Wouldn’t it be interesting to replicate the study using advanced practice nurses as subjects?

Implications for Practice

When examining the significant variables affecting time delays in seeking HIV care, clinicians need to consider how they can make the most significant impact. We may acknowledge the significance of the identified risk variables, but we can’t change them at the time of HIV testing.

We can, however, do the following:

• be sure clients are well-informed and understand their HIV risks;

• make it standard practice to provide HIV test results in person only;

• promote strict adherence to post-test HIV counseling guidelines in our practice sites;

• develop advanced counseling skills (see box, p. 34);

• and develop better communication skills (see box, above left).

The study revealed a significant finding that clients who were not told of their HIV status in person, among all variables, had the longest total delay — more than 54 months — from HIV testing to initial primary HIV care. Will breakthroughs in diagnostic determination of HIV status shorten the time span from testing to treatment? Future research will tell. (For information about new urine and oral tests for HIV, see news flashes, p. 35.)


1. Samet JH, Freedberg KA, Stein MD, et al. Trillion Virion Delay. Arch Int Med 1998;158:734-740.

2. Centers for Disease Control and Prevention. Recommendations for the use of zidovudine to reduce perinatal transmission of human immunodeficiency virus. MMWR 1994;43(RR-11):2-4.

3. Anderson DJ, O’Brien TR, Politch JA, et al. Effects of disease stage and zidovudine therapy on the detection of human immunodeficiency virus type 1 in semen. JAMA 1992;267:2769-2774.

4. Epstein RM, Morse DS, Frankel RM, et al. Awkward moments in patient-physician communication about HIV risk. Ann Int Med 1998;128:435-442.