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. Author manuscript; available in PMC: 2022 Jan 12.
Published in final edited form as: J Acquir Immune Defic Syndr. 2020 Mar 1;83(3):210–214. doi: 10.1097/QAI.0000000000002240

Accuracy in self-report of viral suppression among HIV-positive men with HIV-negative male partners

Rob Stephenson 1, Anna Bratcher 2, Matthew J Mimiaga 3,4,5,6, Robert Garofalo 7,8, Marco A Hidalgo 9,10, Samuel Hoehnle 7,8, Patrick S Sullivan 11
PMCID: PMC8754005  NIHMSID: NIHMS1549539  PMID: 31917748

Abstract

BACKGROUND:

Among men who have sex with men (MSM), there is now clear evidence that the risk of HIV transmission through condomless sex when the HIV-positive partner is virally suppressed is effectively zero. However, an understanding of the accuracy of reporting of viral load among serodiscordant same-sex male couples is missing from the literature.

SETTING:

This analysis uses data from the baseline sample of Stronger Together, a randomized controlled efficacy trial of an innovative dyadic intervention to enhance antiretroviral therapy adherence for HIV serodiscordant male couples in three US cities (Atlanta, Boston and Chicago).

METHODS:

Biomarker-confirmed and self-reported measures of viral load were used to assess the accuracy of self-report of viral suppression. In this descriptive analysis, the percentage of men who inaccurately reported being virally suppressed is compared across demographic, relationship and HIV care characteristics.

RESULTS:

Results confirm those of other recent studies that have shown relatively high levels of inaccuracy in reporting of viral suppression. Although 72.5% of men could accurately report their viral load status, 20% reported that they were virally suppressed when they did not have a biomarker confirmed measure of viral suppression.

CONCLUSION:

These results highlight the need to provide interventions to MSM living with HIV to support access to care and ensure current knowledge of viral load, and to continue to support primary prevention of HIV through condom use and pre-exposure prophylaxis (PrEP). For couples, particularly serodiscordant male couples, interventions that can teach the couple how to collaborate to achieve and maintain viral suppression for the positive partner are an urgent and pragmatic programmatic priority that can equip couples with the knowledge required to correctly implement U=U strategies.

INTRODUCTION:

There is now clear evidence that the risk of HIV transmission through condomless sex when the HIV-positive partner is virally suppressed is effectively zero1–8. This evidence was established first for condomless sex among heterosexual couples through HPTN 052, which reported a 96% reduction in linked HIV transmissions in couples assigned to early ART compared with couples assigned to delayed therapy5. These findings were then reinforced by several other studies. The PARTNER-1 study reported no linked transmissions in 888 sero-discordant couples (548 opposite sex and 340 same sex male couples) who reported condomless sex when the HIV-positive partner was virally suppressed6. The Opposites Attract observational study also reported zero cases of HIV transmission among male couples having condomless anal intercourse when the HIV-positive partner was virally suppressed, and the HIV-negative partner did not use pre-exposure prophylaxis (PrEP)7. Recently the PARTNER-2 study followed 782 sero-discordant male couples with 1593 eligible couple-years of follow-up: 15 new HIV infections were identified, but none were linked within couples, resulting in a HIV transmission rate of zero4. This weight of evidence has given rise to the undetectable equals untransmittable, or U=U movement (www.preventionaccess.org), positioning viral suppression as an important biomedical intervention to prevent new HIV infections.

Undetectable equals untransmittable (U=U) as a bio-behavioral risk reduction strategy rests on an HIV positive individual having an accurate understanding of their viral load and a functional knowledge of the relationship between ART adherence and viral suppression. Several recent studies have illustrated that knowledge of viral suppression is a significant factor among men who have sex with men (MSM) in decision making around condomless anal sex (CAS)9–13. However, there is a growth of evidence that people living with HIV may not always be able to accurately report their viral load14–15. In a study of accuracy of reporting of viral suppression among people living with HIV in the UK, 12.1% of MSM in the sample inaccurately reported their viral load14, Mustanski et al., (2018) report that among a sample of 205 HIV-positive young MSM and transgender women, 34% of participants with a detectable viral load self-reported an undetectable viral load at their last medical visit, and another 28% reported not knowing their VL status15.

Missing from the literature is an understanding of the accuracy of reporting of viral load among sero-discordant male couples, who represent a significant risk group for intervention given the known high levels of per act transmission risk associated with CAS. Results from the DUO Project, a study of 118 sero-discordant male couples, in San Francisco, found that HIV-negative men’s perceptions of their HIV-positive partners virally suppression were instrumental in the decision to engage in CAS16. Thus, partners may be entering into sexual risk decision-making based on perceptions of viral suppression. U=U represents a vital prevention strategy for sero-discordant male couples, but foundational to its success is accurate knowledge of viral suppression status. The current analysis is a preliminary examination of the accuracy of reporting of viral suppression among HIV-positive men with HIV-negative male partners.

METHODS:

This analysis uses data from the baseline sample of Stronger Together, a RCT of an innovative dyadic intervention combining couples’ HIV testing and dyadic adherence counseling to improve treatment adherence and engagement in care among HIV sero-discordant male couples in three US cities (Atlanta, Boston and Chicago) (clinicaltrials.org reference # NCT01772992). The trial’s full protocol, including study recruitment and eligibility screening, is detailed elsewhere and available as an open-access source17. Stronger Together enrolled and followed known sero-discordant male couples (those who were already aware of their sero-discordant status) for 18 months, with study assessments at six month intervals. Eligible participants were two cisgender men (assigned male sex at birth and currently identified as male), both over 18 years of age, residents of one of the three study cities, self-report being in a relationship together for at least one month and report being sero-discordant. Couples were recruited through online websites and mobile application (e.g., Facebook, Twitter, geospatial dating apps, etc.) as well as community venues in each city (e.g., key locations in LGBT neighborhoods, bars, clubs, LGBT community events, etc.). Participants were screened and consented individually: each individual took a preliminary eligibility screener. Screening eligibility also included no recent (past six months) experience of intimate partner violence within the couple of interest and reporting not being coerced by their partner to participate in the study. IPV was assessed using the Intimate Partner Violence scale for Gay and Bisexual Men, a scale developed specifically to measure the experience of IPV in male couples18. Study eligibility was confirmed by the completion of a couple verification survey at the start of the baseline visit that verified that the two individuals are in a sexual relationship and that no eligibility criteria had changed. Each study site obtained approval from its Institutional Review Board (IRB) for all study activities.

Of the 602 men who presented for screening, 586 (97%) men met eligibility criteria, consented to join the study, and completed a baseline assessment visit during 2015–2017. Of these 586 men, 272 were in a couple that was confirmed via HIV testing to be concordant negative (136 couples); these couples were ineligible for randomization. 314 men were in a sero-discordant couple (157 couples). These couples were randomized into the RCT. The current analysis considers the baseline data of these 157 sero-discordant couples.

Two measurements of viral suppression were taken at baseline: biomarker and self-report. Measures of viral suppression were only asked of the positive partner: surveys did not ask the negative partner about their partner’s viral load status. Blood samples were drawn from all HIV-positive partners at baseline: viral load tests were performed on these samples using the Abbot Real Time HIV-1 Assay on the Abbott m2000 sample preparation/Abbott m2000 real time analyzer system (Abbott Molecular Inc., Des Plaines, IL) using the 0.6 plasma protocol. Eleven HIV-positive men did not have a blood draw at baseline (most commonly due to failure to access a vein during phlebotomy) and are excluded from the analysis. The second measure of viral suppression was obtained through self-report during the baseline survey. Participants were asked, “To your knowledge, has your doctor (or another provider) ever ordered a VIRAL LOAD test for you? This would have involved drawing your blood.” and “To your knowledge, what was the result of your last viral load test? If you were undetectable, please put “0.” If you’re not sure, please estimate.” Survey logic required participants to provide a viral load that was numerical in order to avoid <‘s, >‘s or other symbols. Participants could select unknown for their viral load, but no participants selected that option. To be considered virally suppressed on the self-report measure, the participant must have had a viral load test in the past 12 months and self-report a viral load of zero. Men who did not know if they have had a viral load test in the past 12 months (n=10), or who did not know the results of their most recent viral load test (n=16) were excluded from the analysis. The final analytic sample is 120 HIV-positive men with an HIV-negative male partner.

The baseline questionnaire also collected data on demographic characteristics (race, ethnicity, education, and employment), experience of recent (12-month) incarceration, and relationship characteristics. Participants self-reported relationship length and the presence of agreements that allowed for sex with outside partners (categorized as: outside partners not allowed, outside partners allowed with conditions, and outside partners allowed with no conditions). HIV-positive participants self-reported their engagement in HIV-care, including dates (months) of care visits in the past 12 months, whether they were currently taking ART and recent ART adherence measured using the Visual Analog Scale19. The survey did not assess duration on ART. At baseline, all participants also underwent a blood draw to test for current syphilis infection, as determined by a Rapid Plasma Reagin (RPR) titer of 1:8 or greater.

The analysis uses the biomarker confirmed and self-reported viral suppressions to create a measure of accuracy of self-report of viral suppression. Men are categorized into one of four categories:

Accurate reporting of viral suppression: report being virally suppressed with a biomarker confirmed undetectable viral load. Accurate reporting of viral non-suppression: report being not virally suppressed and biomarker confirms a detectable viral load. Inaccurate reporting of viral suppression: report being virally suppressed with a biomarker confirmed detectable viral load. Inaccurate reporting of viral non-suppression: report being not virally suppressed with biomarker confirmed undetectable viral load. In this descriptive analysis, the percentage of men who self-report being virally suppressed but do not have a biomarker confirmed detectable viral load is compared across demographic, relationship and HIV care characteristics. Tests for differences in the prevalence of inaccurate reporting of viral suppression used chi-square tests, or Fishers Exact test when cell sizes were less than five.

RESULTS:

The mean age for the sample was 35.9 years (19–69 years). Most participants (65.8%) were white, 19.2% were black, and 15.0% were multiracial or other (Table 1). This sample was mostly college educated (76.7%) with only 6.7% reporting high school education or less. Almost one-fifth of men reported being unemployed (19.2%) and 2.5% reported a recent history of arrest. Most of the participants self-identified as homosexual or gay (89.7%), with the remaining 10.3% self-identifying as bisexual. Many of the participants reported being in their relationship with their primary partner for less than a year (41.7%). Most participants reported that they had a sexual agreement with their partner (70.6%), with approximately equal numbers reporting that no outside sexual partners were allowed (43.9%) or outside sex partners were allowed with conditions (45.1%). In terms of HIV care, 93% of men had seen an HIV care provider in the last 12 months, 99% reported they were currently taking ART, and 48% reported less than 100% adherence in the past month.

Table 1.

Demographic, relationship and HIV care characteristics of HIV-positive men who self-reported as virally suppressed without biomarker confirmed viral suppression (N=120a) Atlanta, Chicago and Boston, 2015–2017

Overall (n=120) Not Virally Suppressed but Self-Reported as Suppressed (n=96) Otherb (n=24)
Number Percent Number Percent Number Percent P-Value
Ethnicity Latino 15 12.5 4 26.7 11 73.3
Not Latino 105 87.5 20 19.1 85 81.0 0.490
Race White 79 65.8 16 20.3 63 79.8
Black 23 19.2 6 26.1 17 73.9
Other 18 15.0 2 11.1 16 88.9 0.491
Education High School 8 6.7 1 12.5 7 87.5
College or University 92 76.7 20 21.7 72 78.3
Graduate 20 16.7 3 15.0 17 85.0 0.681
Employment Not Working 23 19.2 6 26.1 17 73.9
Working 97 80.8 18 18.6 79 81.4 0.417
Arrested Within the Past 12 Months Yes 3 2.5 1 33.3 2 66.7
No 117 97.5 23 19.7 94 80.3 0.559
Seen an HIV care Provider past 12m Yes 107 93.0 22 20.6 85 79.4
No 8 7.0 1 12.5 7 87.5 0.669
Currently on ARTs Yes 103 99.0 22 21.4 81 78.6
No 1 1.0 0 1 100 0.603
Self-Reported Adherence to ART in the Past Month 100% of Prescribed HIV Medication Taken 49 51.6 9 18.4 40 81.6
Less than 100% of Prescribed HIV Medication Taken 46 48.4 11 23.9 35 76.1 0.508
Have a Sexual Agreement with their Partner Yes 84 70.6 17 20.2 67 79.8
No 27 22.7 5 18.5 22 81.5
Don’t know 8 6.7 2 25.0 6 75.0 0.922
Type of Sexual Agreement No outside partners 36 43.9 8 22.2 28 77.8
Outside partners with no conditions 9 11.0 2 22.2 7 77.8
Conditional outside partners 37 45.1 7 18.9 30 81.1 0.883
Relationship Duration Less than 1 year 50 41.7 2 100 0
1–5 years 41 34.2 13 21.0 49 79.0
Greater than 5 years 29 24.2 12 24.0 38 76.0 0.651
Current Syphilis Infection Yes 2 3.1 7 17.1 34 82.9
No 62 96.9 5 17.2 24 82.8 0.009
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Bolded values are significant at the 95% confidence level.

a.

120 men with complete data out of 157 men with HIV in the study: 11 missing lab confirmed measure of viral load, 26 missing viral load self-report

b.

Includes men who report being virally suppressed and are virally suppressed, report being not virally suppressed and are virally suppressed, and report being not virally suppressed and are not virally suppressed

In terms of accuracy of reporting of viral suppression, 72.5% of men accurately reported their viral suppression status: this was comprised of 62.5% of men (n=75) who accurately reported that they were virally suppressed (e.g. both self-report and biomarker) and 10% of men (n=12) reported they were not virally suppressed and had a detectable viral load. In contrast, 27.5% (n=33) of men inaccurately reported their viral suppression status. In total , 20% (n=24) of men reported that they were virally suppressed and did not have a biomarker confirmed measure, and 7.5% (n=9) of men reported that they were not virally suppressed but did have a biomarker of viral suppression. As shown in Table 1, the reporting of being virally suppressed but not having a biomarker confirmed measure did not vary significantly by demographic, relationship or HIV care characteristics. Only those men who also had a positive biomarker for syphilis were significantly more likely to inaccurately report their viral suppression status.

DISCUSSION:

These results confirm those of other recent studies that have shown high levels of inaccuracy in reporting of viral suppression. Even in this sample of mostly white, middle-aged, college-educated men who are actively engaged in care, we found that almost one-quarter had inaccurate knowledge of their viral suppression. These relatively high levels of inaccurate reporting of viral suppression exist in a sample that reported almost universal engagement in HIV care and ART medication, although approximately half of the sample reported sub-optimal ART adherence. In explaining their findings of high levels of inaccurate report of viral load, Mustanski et al., note that individuals may be making decisions based on their recall of their most recent medical visit15. One possible explanation is that participants may have been told at their last medical visit that they were virally suppressed: that visit may have been several months ago and, given the reported low levels of adherence in the sample, viral suppression status may have changed. Current clinical guidelines for viral load testing are for tests repeated at 3–4 month intervals for those on a stable, suppressive regimen (clinicans may extend to 6 months for patients who have been suppressed for more than two years). Therefore, men may not be basing their assessments of the viral suppression status on current information. This highlights an important aspect of the U=U approach: the need for education on the dynamic nature of viral suppression and the need for functional knowledge of how ART non-adherence shapes the loss of viral suppression. The results also underscore the need for continued focus on primary prevention strategies, enabling access to and the skills need for condom use and PrEP uptake.

The results do not necessarily represent an intentional misrepresentation of viral suppression; rather, men might be reporting their viral status based on misperceptions or information that was out of date. Interestingly, in this small sample, there was no difference in the accuracy of reporting of viral suppression between those with optimal and sub-optimal self-reported ART adherence. It may be that men struggle with the accuracy in reporting of both their viral load and their ART adherence. Alternative explanations for the high levels of inaccuracy in reporting viral suppression, therefore, may lie in how participants understand and respond to questions about viral load. While much has been written about the accuracy of self-reporting of ART adherence20, there has been relatively little research attention to how individuals answer questions about their viral load status. Social desirability bias may lead participants to guess their viral load or misrepresent themselves as suppressed. Further work is warranted to understand how individuals interpret, and respond to, self-reports of viral load, including work to test the validity of measures of self-reported viral load.

The only significant variation in the reporting of accuracy of viral suppression was among men who also had a laboratory confirmed positive test for syphilis. These results must be interpreted with caution, because only two men tested positive for syphilis. Neither of these men self-reported having syphilis recently. Men who are receiving a positive syphilis test as part of a study assessment and are not previously aware that there were infected with syphilis are presumably not testing regularly for STIs. It seems plausible that these men were not linked to care, suggesting that they were basing their knowledge of their viral suppression on information given to them at medical visits some time ago.

There are a number of limitations to this study: the analysis sample is small and this prevents a complete multivariable analysis of factors associated with viral load reporting inaccuracy. Further, biomarkers of ART were not included to allow accurate measures of ART adherence. Also, surveys did not ask negative partners about their partner’s viral load: this would have enabled an analysis of dyadic discordance in reporting of viral suppression. Couples who reported IPV were ineligible for the RCT, common practice for dyadic interventions. However, couples experiencing IPV or imbalanced power dynamics require specifically tailored dyadic HIV prevention services, and future research should consider the unique needs of these couples.

Considered as an exploratory, descriptive study, the results illustrate a relatively high level of inaccuracy of reporting of viral suppression among HIV-positive men in sero-discordant relationships. The results suggest that in general men living with HIV need support to have consistent access to care and thus have timely knowledge on viral load, and reinforces the need to continue to focus on primary prevention strategies. U=U should be considered an important component of a multifaceted HIV prevention strategy: untill PrEP is more widely accessible, interventions focused on U=U may be one of the most promising HIV prevention strategies. Creating technologies that all those living with HIV to self-test and regulate their viral load shoud be considered a research priority. For couples, particularly sero-discordant couples, interventions that can teach the couple how to work together to achieve and maintain viral suppression16 and can equip couples with the knowledge required to correctly implement U=U strategies, should be considered a programmatic priority.

Funding Sources:

This publication was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R01HD075655 (mPIs: Garofalo, Mimiaga, and Stephenson).

Footnotes

Conflicts of interest: The authors have no conflicts of interest to declare.

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