Why Do Study Participants Misreport Their HIV Status?

Charday Penn via iStock

Why do some study volunteers misreport their HIV status to researchers? Maybe they misunderstood the conditions for incentive payments or the question itself, speculated the authors of a recent study on the subject. Or maybe the questions were not phrased in a way that is easy for laypersons to understand, countered David Malebranche, M.D., M.P.H., of Morehouse School of Medicine. He cited researchers' own responsibilities when working with marginalized groups: "It's always curious to me how medicine and public health researchers, particularly when it comes to studies with black folk, are quick to interpret negative findings as a deficit on our part," Malebranche said, "and never entertain the idea that maybe they have a role in the findings -- and there are areas in which medicine, facilities, staff, and researchers need to improve on how they conduct themselves, see patients, and do research with participants."

As part of the National HIV Behavioral Surveillance (NHBS) program, the study recruited men who have sex with men (MSM) for standardized interviews and HIV tests at various venues in 19 U.S. cities. Separate incentives were offered for the interview and test, but the consent form stated that an HIV test would also be performed for participants living with HIV. Trained interviewers collected behavioral and demographic data and also asked about the results of the volunteer's latest HIV test.

The total sample included 8,921 men, 1,818 (20%) of whom tested positive for HIV. Among those found to be living with HIV, 1,519 had told interviewers that they were seropositive, and the remaining 299 had said that they didn't know their status or were HIV negative. However, at least one of seven common antiretrovirals was found in the blood of 49% of those who reported not knowing that they were living with the virus. These 145 men were classified as "misreporters" -- they were on antiretroviral therapy and therefore knew that they were living with HIV but failed to disclose that fact in a confidential research interview for which they had volunteered. The 154 men who did not have antiretrovirals in their blood were deemed to be unaware of their serostatus.

Researchers were able to test the viral load in 95% of participants who either misreported their status or were unaware of their status. Detectable viral loads were found in 22 (16%) of people who misreported and 120 (82%) of the unaware. Fourteen of these 22 had viral loads below 10,000 copies/mL, while 49 of the 120 had viral loads of 10,000 copies/mL or more. The relatively low viral loads among those who misreported suggest that they were not taking their medications as prescribed, rather than not taking them at all, study authors noted.

Those who misreported were more likely to be over age 35 and have health insurance than those considered unaware. Compared to participants who disclosed their HIV status, those who misreported it were more likely to be African American, bisexual, and have reported experiencing discrimination. "Efforts should also be made to reduce participant misreport by ensuring that interviews promote accurate reporting and that the mode of administration ensures that participants feel comfortable talking about sensitive topics," the study authors recommended for future studies.

"We know historically (and currently) how medical and research systems often misinterpret behaviors among black and/or bisexual men," explained Malebranche. He also asked about the interviewers, "Were they all non-black? How were they trained in cultural competency and humility for this study?" Malebranche called for more studies such as one from Stanford University that showed better health outcomes for African-American men when medical providers are also black.

Keith Sabin, Ph.D., an epidemiologist with UNAIDS (who has also studied HIV status self-reporting in behavioral research), agrees that qualitative research into the reasons for respondents' apparent distrust of interviewers needs to be conducted. "Future surveys will need to assure, or develop, a greater degree of trust in the communities and undertake efforts to improve accurate self-reporting."

What does the study result mean for outreach efforts? "It means that we are at a crossroads and need to fund and support systems, particularly for black MSM, that are run by black MSM, and staffed by black MSM, so that participants feel comfortable seeing a reflection of ourselves across the table from us during research studies and medical examinations," Malebranche emphasized. He suggested a nested qualitative study with the people who misreported from the current study to learn their reasons for not disclosing their status. The study environment, systems, and people involved should also be considered to see how these may have contributed to the outcome, he added.

The result of the study doesn't mean much, David P. Holland, M.D., of Emory University offered. "The issue we have is people who are known to be positive but are out of care. In this case, the vast majority were already in care, so although they are certainly affected by stigma (which is a problem), they aren't the ones we worry about so much. I would be more worried about the 16% who misreported and are not in care."

Actually, it means that the success of programs to get people into treatment is underestimated, Holland noted. "Really, what this says is, at-risk men did test and did get on treatment." Those who conduct outreach need to address stigma and discrimination, rather than try to ferret out misreporting by people who are actually in care, he added.

One thing is clear, however: Comfort with the process and trust in staff are important for getting accurate results, both in a study environment and during outreach activities. That trust appears to have been lacking in the current study. Both future studies and other interactions around HIV, such as promoting or performing testing, need to do a better job in fostering such trust.