McKinstry, Laura A. MPH*; Goldbaum, Gary M. MD, MPH†; Meischke, Hendrika W. PhD, MD*
HUMAN IMMUNODEFICIENCY VIRUS (HIV) TESTING and counseling has been a fundamental component of HIV/AIDS prevention and treatment since the late 1980s.1,2 HIV testing and counseling provides an opportunity to inform clients about HIV acquisition and transmission, help people assess their own risks, and potentially change behavior. Indeed, some studies have shown that people who are aware of their positive HIV serostatus are more likely than those not aware to change their risky behaviors.3–5 Testing for HIV also allows for early detection of the virus, which may improve individual clinical outcomes, promote use of antiretroviral therapy before immune system damage, and prolong and enhance the quality of life for those persons infected with HIV.6–9
The current recommended protocol for HIV Counseling, Testing, and Referral (HIV CTR) uses a client-centered counseling model,10 which emphasizes personalized risk assessments as well as establishing prevention goals and strategies. This model typically requires 2 face-to-face encounters with prevention counselors or other health care providers. During the first visit, the patient gets tested, and on the second visit, he or she receives the results, with prevention counseling occurring to varying degrees at 1 or both visits. This client-centered model of HIV CTR has been shown to effectively reduce risky sexual behavior and the number of newly acquired sexually transmitted infections among heterosexuals11 but is not consistently used in STD clinics12 and may not be employed outside of public health clinics.
The benefits of a client-centered counseling model are notable. However, this type of model does not address many impediments to testing and receiving results. While rates of testing for HIV seem to be on the rise,13,14 many people have never tested for HIV for a variety of reasons.15–18 Even if a person overcomes barriers to testing, there is no assurance that he or she will obtain test results. Data from a large national survey conducted in 1994 and 1995 suggest that an average of 13.3% of persons do not return for their results.19 Failure-to-return (FTR) rates at publicly funded clinics where HIV CTR may not have been the reason for visit, especially STD clinics, tend to be even higher than rates for other sites offering HIV tests.19–23 Although testing and FTR rates may vary, the implications are the same: those HIV-infected persons who do not test for HIV or who, if tested, do not return for their results represent lost opportunities for HIV prevention. Individuals testing HIV-negative who do not return for their results also represent a lost opportunity to prevent these persons from later acquiring HIV.
Providing test results by telephone may be a way to address some barriers to HIV testing and may increase the numbers of people who obtain their test results, even as rapid testing becomes more widespread. While rapid testing offers persons testing, counseling, and results in one session and has been shown to increase the numbers of people who get HIV test results, persons testing positive by rapid tests are still expected to return to get confirmatory results in person.24 Cost and other considerations may also limit the use of rapid testing in some settings.
We examined existing data on all people who tested for HIV at several HIV/AIDS Program (HAP) sites at Public Health–Seattle and King County (PHSKC) from 1995 to 2002. We investigated differences in the rates of receiving HIV test results before and after telephone notification of test results was offered for all people and then for persons testing HIV positive and HIV negative. We also examined the differences in rates of receiving test results between the 3 telephone notification groups: offered and accepted, offered but declined, and not offered telephone notification of results.
Materials and Methods
HIV Testing Procedures
The HIV/AIDS Program (HAP) offers anonymous and confidential testing at multiple sites throughout Seattle and King County to a population that is largely at high risk for HIV. HAP began offering HIV test results over the telephone to selected clients in October of 1997 as part of a pilot study and expanded telephone notification of results to all eligible clients (see below) on March 26, 1998. While HAP currently provides rapid HIV testing at various outreach sites, we focused on data collected only from people receiving a standard HIV blood draw at a public health clinic.
From 1995 to 2002, HAP clients were generally seen by appointment. At the initial visit, clients registered confidentially using a real name or anonymously by creating a code that could be reliably reconstructed at future visits. They then completed a registration form and a questionnaire, detailing prior HIV testing, STD history, and HIV-related risk behaviors. Health care providers also filled out an encounter form, noting whether telephone results were offered and subsequently accepted or rejected, as well as the client's test results and date of follow-up. Data from these forms were entered into separate databases.
A trained HIV test counselor conducted client-centered pretest counseling in person. Clients were offered telephone notification of results during the pretest session if they: (1) agreed to meet with a test counselor within 48 hours of receiving a positive result, (2) did not exhibit signs of mental impairment, and (3) did not screen as suicidal or homicidal.
Clients who were not offered telephone results or who chose to receive results in person scheduled a second appointment to get results and posttest counseling. Clients who were offered and accepted telephone results called a separate telephone line devoted to giving results during designated time periods approximately 7 days after the pretest session to obtain results. When calling for results, clients identified themselves using their name or anonymous code, a chart number, and a unique test results code (e.g., something they alone would know). If a person could not provide all 3 pieces of information, he or she was instructed to return to the clinic to receive results in person. Persons receiving positive results over the telephone were offered appointments for in-person posttest counseling and a medical evaluation by a HAP-affiliated doctor. If a client tested positive and failed to get results within 2 weeks, HAP staff attempted to contact him or her to give results.
Data were collected from all individuals who tested for HIV from 1995 to 2002 at a HAP site, including a free-standing clinic at the county hospital and a nonprofit community-based health clinic for gay, bisexual, and transgender men. Data earlier than 1995 were not available. Data after 2002 were not analyzed due to changes to the intake surveys and to markedly increased use of rapid testing starting in 2002. Data from the separate databases were merged and all identifying information was removed. A unique ID was assigned to each client.
Persons testing for HIV using rapid testing methods were excluded from analyses because rapid testing allows clients to receive preliminary results within minutes or hours. Persons involved in research studies and persons testing positive for HIV before their first visit to a HAP testing site were also excluded from analyses, as study participants and people who are already aware of their HIV status are likely to behave differently than those who are testing specifically to learn their HIV status. Because persons who test repeatedly for HIV likely differ from persons testing for the first time, only a person's initial visit to a HAP clinic was included in the dataset. Owing to small numbers, transgender persons were excluded from subanalyses.
Demographic and risk behavior characteristics were calculated for persons testing for HIV before and after telephone results were offered. Risky behavior categories include: men who have sex with men and who use intravenous drugs (MSM + IDU), men who have sex with men but who do not use intravenous drugs (MSM), intravenous drug users (IDU), and “Other,” which consists of heterosexuals and women who have sex with women. Rates of receiving HIV test results for the before and after time periods were calculated for both the overall population and for persons testing HIV-positive and HIV-negative. For the time period after telephone results were offered, demographic and risk behavior characteristics as well as the rates of receiving test results were calculated for persons who were offered and accepted, offered but declined, and not offered telephone notification of HIV test results. In addition, demographic and risk behavior variables were computed for persons who received HIV test results and those who did not. χ2 tests were used to test for associations among categorical variables.
To control for confounding, logistic regression was used to test for an association between time period (before/after) and getting test results, as well as an association between telephone notification group and getting results (yes/no). Variables that were significantly related to both the exposure and outcome were considered potential confounders. Unadjusted odds ratios, as well as adjusted (for age, sex, race, HIV serostatus, and risk category) odds ratios were calculated. All analyses were performed using SPSS version 12.0.25
This study was approved by the University of Washington Human Subjects Division.
Subject Characteristics and Rates of Receiving Results Before and After Telephone Notification
From January 1, 1995, to March 25, 1998 (before telephone results), 5517 persons tested for HIV, and from March 26, 1998, to December 31, 2002 (after telephone results), 3886 persons tested for HIV at HAP testing sites. Before telephone results were offered, the population testing for HIV was three-quarters male and 80% white. Nearly half of the population was MSM and most were 18–45-years old (Table 1). After telephone results were offered, the proportion of males and whites that tested for HIV decreased while the proportion of persons between the ages of 18–25 and persons in the “other” risk category increased. In both periods, most of the population (98%) tested negative for HIV.
The overall rates of receiving HIV test results before and after telephone results were offered were 97% (5219/5391) and 95% (3610/3814) respectively, largely reflecting rates for persons testing HIV negative. For persons testing HIV positive, the overall rates of receiving results during before and after periods increased from 85% (87/102) to 94% (64/68) (P = 0.07). After controlling for age, sex, race, and risk category, a marginally significant increase in the rates of receiving test results for HIV-positive persons was seen (OR = 3.3, 95% CI = 0.97–11). For HIV-negative persons, there was a statistically significant decline in the rates of receiving test results (OR = 0.6, 95% CI = 0.5–0.8). The proportion of HIV-positive persons who returned for a follow-up appointment did not change over time (70% before and 69% after telephone results were offered, P = 0.9).
Characteristics of Telephone Notification Groups
After PHSKC began offering telephone results, 72% of persons who tested for HIV were offered and accepted telephone results, 14% were offered but declined telephone results, and 14% were not offered telephone results. Gender, age, race, HIV serostatus, and risk group varied by telephone notification group (Table 2). Compared to persons in the group offered and accepting telephone results, persons in the group offered but declining telephone results were more likely to be black or Hispanic, HIV positive, and MSM but less likely to fall into the “Other” risk category. There were relatively more blacks and Asians and fewer whites in the group not offered telephone results compared with the group offered and accepting telephone results. The group not offered telephone results had a larger proportion of HIV-positive persons than the group offered and accepting telephone results, but a relatively smaller proportion of positives than the group offered but declining phone results. Lastly, the group not offered telephone results was younger than the other 2 groups, with a noteworthy proportion of persons <17-years old.
Telephone Notification Groups and Rates of Receiving Test Results
Rates of receiving HIV test results for the group offered and accepting telephone results were higher compared to the rates for persons in the other 2 groups (Table 2). After adjusting for age, sex, race, HIV status, and risk group, telephone notification group remained significantly related to getting results (Table 3). The likelihood of getting HIV test results was lowest for persons in the group not offered telephone results. In addition to telephone notification group, race and risk category were significantly associated with getting results. Blacks were less likely than whites to get test results (OR = 0.5, 95% CI = 0.3–0.8) whereas MSM and persons with “Other” risk were more likely than MSM + IDU to get test results (OR = 3.6, 95% CI = 1.7–7.6; OR = 2.2, 95% CI = 1.1–4.5 respectively; data not shown).
We found that the proportion of persons who received their HIV test results in our population was initially very high and remained high over time. However, this proportion declined slightly for persons testing HIV negative. This may be because a larger proportion of people who currently test for HIV do so only because HIV tests are offered as part of other health care services. Therefore, these people (many of whom, in our population, are heterosexual and, consequently, likely to test negative) may not be inclined to follow up and get their test results.
After telephone results were offered, the proportion of persons testing HIV positive who learned their results increased from 85% to 94%, although this result was not statistically significant. This result is consistent with one study that found 35% more low-risk persons obtained HIV test results after telephone notification of results and posttest counseling was initiated at the clinic in Denver County.26 One reason for the increase in rates of receiving results over time may be the development and availability of antiretroviral medications in the mid-to-late 1990s. These drugs, while not cures, have greatly increased the lifespan and improved the quality of life for HIV-infected individuals. Thus, a person who thinks that he or she will test positive might be more inclined to get test results knowing that these drugs are available.
The increase in rates of receiving positive test results over time are promising for 2 reasons: Persons testing HIV positive have been shown to change their risky behaviors once they are aware of their serostatus.3–5 An increase in the proportion of HIV-positive persons getting their test results presents greater opportunities for preventing the spread of this infectious disease. Additionally, the CDC has recommended that prevention activities be increasingly directed at HIV-infected persons and not just towards people who are behaviorally at risk for HIV.27 This Serostatus Approach to Fighting the Epidemic (SAFE) consists of 5 steps, one of which is to increase the number of HIV-positive persons who know their serostatus.27 Our results suggest telephone notification of results may increase the numbers of HIV-positive persons who know their status.
Telephone notification of test results became available to HAP clients on March 26, 1998. After that date, persons who were offered and accepted telephone results were more likely to get their test results (96%), compared with persons who were offered and declined (93%) as well as people who were not offered telephone results (89%). This finding remained after controlling for demographic and risk variables and is consistent with one study that showed that those who self-select to receive telephone results will get them.28 That study randomized high-risk and homeless youth in Portland, OR, to receive HIV test results either over the telephone or in person. However, those persons in the telephone notification group had the option of receiving their results over the telephone or in person; most (88%) received their results over the telephone. In this Portland study, more people in the telephone option group (58%) received their HIV test results than did people in the face-to-face notification group (37%). This suggests that providing HIV test results over the telephone is at least as good as other methods.
The generalizability of our findings is limited due to the nonrandom nature of the population we studied. People testing for HIV at HAP locations are self-selected. Moreover, although people are offered telephone results based on specific criteria, people self-select to decline telephone notification. Indeed, many HIV-positive persons self-selected to receive their results in person. Also, the overall rate of receiving test results in our population was higher than has been observed in previous studies, suggesting our population or our program differs from those previously studied. Additionally, our study did not include STD clinic patients so our findings cannot be generalized to them, though PHSKC does provide telephone results to this population. However, our basic finding in support of telephone results is strengthened by previous studies that have addressed telephone notification of HIV test results.
Concerns have been raised about possible adverse consequences to providing HIV test results over the telephone, particularly if the result is positive. However, one study suggested that both HIV positive and negative individuals could receive their results and posttest counseling over the telephone with no adverse consequences.29 Interestingly, HIV-positive persons testing at HAP sites often self selected into the face-to-face notification group (Table 3), suggesting that HIV positives suspect their status before testing and decide on their own to receive results in person.
Another concern with telephone results is the amount of counseling persons getting telephone results receive. While persons receiving positive test results over the telephone are required to come back for a follow-up visit, persons receiving negative HIV tests are not. Some people can benefit from the standard testing and 2-counseling sessions.30 However, with a push towards rapid testing, it is likely that most people will receive one counseling session versus two. People getting rapid HIV tests with one counseling session do not appear to engage in riskier behavior nor to acquire more STDs 1 year after testing than persons getting standard testing and counseling.30
Telephone notification of results seems a reasonable option given that people like to have choices.31 One study interviewed or conducted focus groups with 100 participants who had attended a STD clinic, a needle exchange program, or a sex venue for men who have sex with men and found that many participants were eager to receive HIV test results over the telephone.17 A randomized trial of 460 people attending similar venues found that 45% of participants preferred to receive their test results by telephone.18 In a study conducted at an urban STD clinic in the metropolitan Denver area, people who were asked why they chose to receive their results and counseling by telephone overwhelmingly noted convenience.26 As the CDC has recommended that HIV testing become part of routine medical care,32 offering alternative methods for testing and counseling may be more critical than ever to assure that people get their results.
Notifying persons of their HIV test results over the telephone may increase the likelihood that people will receive positive test results and does not lead to substantial declines in the percentage of people who receive their results. Our study suggests that providing HIV test results by telephone is at least as good as other methods. Telephone notification of HIV test results is a useful choice for some patients and should be considered as one of many alternative HIV testing and counseling options for publicly funded HIV testing and counseling programs.
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