Results released this week at the United States Conference on AIDS, from an online nationwide survey of more than 300 people living with HIV on antiretroviral therapy, show that participants are very involved in engaging with their healthcare providers in the management of their HIV; nearly all (97 percent) said that they are proactive about managing their HIV condition, including drug treatment. However, the survey findings also show that about three in four participants would like to spend more time discussing topics with their doctor about HIV drug treatment (74 percent) and the impact of HIV on their lives (71 percent) during doctor office visits but only 39 percent indicated that they understand all the information shared by their doctor about the management of their HIV drug treatment.
Results of the survey, which examined the breadth and depth of communications between people living with HIV and their doctors, including level of preparation by patients for visits, content of discussions during visits, and commonly used information resources, were released during the 2013 USCA, the largest annual HIV gathering in the nation. The survey was conducted complementary to Merck’s national HIV education campaign, I Design, which baosts celebrity spokesmen famed photographer Duane Cramer (who was on the cover of HIV Plus in July and is pictured above) and Project Runway All-Stars winner Mondo Guerra (who was on the cover in 2012). I Design is meant to empower people living with HIV to have open and meaningful discussions with their doctors.
“As someone who has lived with HIV for close to 20 years, I know there are numerous topics to discuss during each visit to the doctor, and can understand why many people may find it difficult to cover all of them,” said Cramer. “Preparing for discussions with my healthcare provider by prioritizing what I want to discuss about my medicines, my other health conditions and relevant aspects of my life have been important factors to my HIV treatment plan over the years. This is what I encourage people to do as part of the I Design campaign.”
Pictured above: HIV Plus editor in chief Diane Anderson-Minshall and contributor Jacob Anderson-Minshall flank Project Runway All-Stars winner Mondo Guerra at the I Design booth at USCA 2013
Key findings from the survey show that respondents are active about managing their HIV, with most indicating that they are proactive about making doctor appointments (85 percent), talking to their doctor about things that concern them (84 percent) and talking to their doctor about HIV drug treatment options (77 percent). In addition, more than half (56 percent) research HIV and HIV-related topics, and many (42 percent) talk to others living with HIV to proactively manage their HIV condition.
The survey results are "very encouraging," says Dr. Michael Gottlieb, Associate Clinical Professor of Medicine, David Geffen School of Medicine, UCLA, "however they underscore the need for more in-depth discussions between people living with HIV and their doctors — not only regarding their treatment regimens, but also how the disease is affecting their lives overall. Communication between healthcare providers and patients is the cornerstone of developing and maintaining a successful HIV treatment plan.”
Respondents selected that they would like to spend more time discussing how their current HIV drug treatment regimen is working (40 percent), other HIV treatment options (30 percent), health conditions they have other than HIV (30 percent), side effects of their current HIV medications (28 percent) and taking their current HIV treatment as directed (13 percent). Respondents also indicated that they would like to spend more time discussing the physical impact of HIV on their bodies (51 percent) and the impact of HIV on their sex lives (26 percent), day-to-day lives (25 percent), mental or emotional well-being (29 percent) and relationships with their loved ones or family (15 percent).
Both Guerra and Cramer were out in force at the USCA, talking to some of the 2,000 participants about what they needed from their doctors.
