Survey also shows fear of side effects undercuts care
Treatment applauded but side effects remain
Study results show that concerns about side effects may prevent patients from seeking treatment.
Improvement in Global HIV Literacy Needed
Based on the ATLIS findings, there is a strong need for continued education on a global level about critical HIV and AIDS topics. Overall, 69% of respondents said they wished they knew more about HIV and its treatment. This was most commonly voiced by respondents from Latin American (78%) and Africa (71%).
When respondents were asked to describe how HIV drug resistance develops, only 17% accurately answered the question. Fifty-four percent answered incorrectly or did not know the answer and 29% provided only partially accurate answers. North American (48%) and Asian/Pacific (20%) respondents were most likely to select the correct answer to the question, whereas African respondents were more likely to select an inaccurate answer or did not know (79%), followed by respondents from Latin America (58%) and Europe (54%). Previous studies have shown a strong correlation between a good understanding of HIV drug resistance and improved treatment adherence. Overall, 26% of the respondents reported that they had elected not to seek treatment, because they believe that antiretroviral therapy (ART) causes too many side effects, with responses from Europe (42%) and South Africa (29%) being most prevalent.
"When the HIV and AIDS pandemic began in the early 1980s, the overarching goal of education was to give people hope and the goal of treatment was to prolong life," says José Zuniga, PhD, president/CEO of IAPAC. "Despite the incredible strides we have made, what this study shows is that some people are rejecting life-saving treatments, because they fear the side effects of the medications that could potentially save their lives, while others on treatment have unnecessarily resigned themselves to live with side effects and poor tolerability in an age where less toxic treatment options are available. Patients can and should now expect more from their HIV treatment."
While the ATLIS results show that people living with HIV and AIDS believe the potency and overall efficacy of ART has been proven to help patients live longer lives, their concern centers around a number of short- and long-term side effects. Thirty-four percent of treatment-experienced respondents discontinued their treatment primarily because they believed it caused too many side effects. ATLIS found that more than half of all respondents worried that their medications will cause one or more of the following: face or body shape changes (58 %), gastrointestinal problems (54 %), fatigue or anemia (54 %) and liver disease (54 %). Respondents in Latin America and North America voiced significantly more concern about many potential side effects than respondents from other regions (P < 0.05), while African respondents voiced significantly less concern (P < 0.05). Female respondents in most regions, especially those in Europe, worried more than male respondents in their respective regions about bone loss and face or body shape changes.
"ATLIS results indicate there is still a strong need to educate HIV-positive patients and the world around them. The findings demand an increase in global HIV and AIDS literacy," Zuniga says. "It is critical that we empower HIV-positive patients to take an active part in the management of their disease by educating them on the importance of adhering to their treatment."
The ATLIS findings show that nearly half of those patients surveyed (48%) reported being in a heterosexual relationship, reinforcing that HIV is reaching broader populations. A third of total respondents claimed to be in monogamous relationships. African respondents were the most likely to be in a monogamous relationship. Conversely, respondents in North America (25%) and Europe (21%) were most likely to have sex with casual partners. Respondents in Latin America were more likely not to disclose their current sex practices.
[Editor's note: ATLIS was conducted from March through May 2008 via a combination of Internet, phone and in-person recruitment methods by Ipsos Insight Health. Interviews were conducted with a total of 2,968 HIV-positive adults (2,049 male and 919 female). To mirror the actual population with HIV, specific effort was made to recruit both treatment-experienced and treatment-naïve respondents. All respondents signed confidentiality/non-disclosure agreements prior to initiating the survey to ensure any information they shared would be kept confidential in accordance with local laws. The questionnaire itself was translated in local languages, and was slightly tailored for each country to include socially acceptable language. The methodology used in the ATLIS study is quantitative. Results were based upon a convenience sample of HIV-positive people within each of the countries of interest. For further information on IAPAC and ATLIS, please visit: www.iapac.org.]
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