Can the HIV world create effective, sustainable adherence interventions?
[Editor's note: In this issue of AIDS Alert, we have a special report on HIV antiretroviral adherence, why it often isn't sustainable, and where clinicians and researchers can go from here. Experts provide a look at a multifaceted problem that needs an individualized solution.]
Can the HIV world create effective, sustainable adherence interventions?
Most solutions 'neat, plausible, and wrong'
HIV antiretroviral adherence interventions have been broadly employed in the roughly dozen years since medication adherence became an issue. Interventions have combined medical and behavioral science, sometimes pairing technological innovation with conventional socio-behavioral counseling and education.
And yet, experts say, no one has found a magic bullet, no one-size-fits-all approach that will help keep people on their medications and slow HIV mutations and drug resistance.
"There is no one technique for adherence, or we'd all be using it now," says Jane M. Simoni, PhD, professor in the department of psychology at the University of Washington in Seattle, WA. Simoni has been investigating HIV adherence interventions for years, including studies in the Bronx, NY, China, and the Mexico-United States border.
For anyone who asks why Simoni and other researchers haven't come up with a better adherence strategy for HIV clinicians to use, she quotes H.L. Mencken: "There is always a well-known solution to every human problem — neat, plausible, and wrong."
Simoni's own research often has shown positive effects, but small effects, she says.
One recent study found that peer intervention was associated with greater self-reported adherence, but the effect was not maintained at follow-up, and there was no significant difference in biological outcomes.1
"I thought peer support would be possible and sustainable," Simoni says. "I wanted somebody to train people to be buddies [to HIV patients], and I liked this approach from the perspective of empowering peers."
The HIV clients involved in the intervention loved it, but the intervention didn't seem powerful enough to overcome the significant barriers people have to maintaining and sustaining long-term adherence, she adds.
The next step for researchers is to analyze which groups of people had a better response to the adherence intervention, suggests David Huh, MS, a doctoral student in clinical psychology at the University of Washington. Huh was a co-author of the study.
"The preliminary findings are that people with worse mental health issues benefited from the intervention," Huh says. "We should also look at different socio-demographic variables to see which groups are at particular risk for nonadherence."
Clinicians can use this information to design screening tools and to target adherence strategies, he adds.
However, it's too simplistic to say the problems with HIV medication adherence are related to the multiple social-economic challenges faced by many people infected with the virus.
The truth is that any kind of medication adherence is challenging for people, says Peter J. Dunbar, MB, ChB, MBA, an associate professor of anesthesiology and an adjunct associate professor of health services at the University of Washington in Seattle, WA. Dunbar is a co-author of the adherence study on peer support.
"The trouble is that adherence is not an easy behavior," Dunbar says. "It's more complicated than eating food."
Dunbar and a co-investigator tested their own adherence to a task they had designed for a pain study in which participants were instructed to fill out a questionnaire about their pain three times a day.
Both well-educated researchers failed to be completely adherent.
"Guess who were the worst compliers in the pain trial?" Dunbar says. "We couldn't remember to do it at lunch time."
Adherence problems are common in many areas of medical care, including diabetes, antimicrobial medication use, and others, Dunbar and Simoni say.
But what makes HIV antiretroviral adherence unique is that its adherence bar is very high because of the way the virus can so easily mutate.
"I haven't given up on HIV adherence research, but we always said we need easier medications for people to take," Simoni says.
"To say we need 100% adherence is ridiculous," she adds. "Never before in history have people been asked to take such a complex regimen."
Although the once-a-day ART regimens are a huge improvement, there remains the problem of this disease requiring people to almost never forget to take their pills.
Heart disease patients who are adherent only 50% of the time can do fine, Simoni says.
"In HIV, if you go away for a weekend and forget your medications, your viral load may go up," she adds. "We were joking the other day about waiting for a once-monthly injection for HIV."
Also, while once-daily regimens are easier for patients to remember, they also make it easier for patients to have bad outcomes, she notes.
"If you take a medication once a day, it's easier, but if you forget it for that day, then you have a 48-hour window between one dose and the next," Simoni says. "You'll have an overall higher percentage of doses taken, but your biological outcomes might not be better."
The recent adherence research and other studies showing lukewarm improvements in adherence outcomes suggest that HIV standard of care actually is pretty good, Huh says.
"Even though we're not detecting huge benefits in adherence intervention strategies, another way to look at it is that standard of care is pretty effective," he explains. "So to do better than standard of care is actually fairly difficult."
The key to better ART adherence might be for each clinic and clinician to tailor an adherence strategy to each individual patient, and then to provide follow-up for that patient to maintain adherence behaviors, Simoni, Huh, and Dunbar suggest.
"What the field needs is to develop a toolbox of adherence strategies and to look at adherence systematically," Simoni says.
"We need to take a fine-toothed comb and test which people actually benefited the most from an intervention," Huh says. "Then we build on this."
For instance, researchers might identify that patient A with these characteristics would benefit from intervention strategy XY, he adds.
Also, adherence should be started before patients begin an antiretroviral regimen, continue as they initiate therapy, and follow them through a maintenance point, Simoni suggests.
"Before you put people on these medications, start thinking about their potential barriers to adherence," she says.
It's a universal truth among psychologists that the best predictor of future behavior is past behavior, so clinicians should ask patients who are about to initiate ART these kinds of questions:
- How did you do on your recent antibiotic treatment?
- What were some difficulties you had in taking the pills?
- What time of day did you most remember to take your pills?
- Have you been drinking, and does this cause you to forget your medication?
For instance, if a patient is a methamphetamine addict, it might not be a good time to start therapy, Simoni explains.
"Develop a toolbox and think systematically before patients start medications, and respond to their adherence behavior with a strategy that is dynamic and complex as their behaviors," she says.
Individual patients can be grouped according to their particular adherence challenges, so a strategy that works well with one busy professional who has a bad memory for taking pills at lunchtime might work well with others like him, Dunbar says.
This is where various socio-behavioral strategies will work for some.
Simoni's research has shown that alcohol use is associated with poor adherence, although there are interesting exceptions: "One guy in a study used to have the last call bell at a bar as his alarm to take his medication," Simoni says.
Also, stable housing, family/friends or other social support are associated with better adherence outcomes. Illegal drug use, stigma, and social disconnectedness are among the factors that have been linked to poor adherence.
So adherence strategies that increase the impact of positive environmental/social conditions and lower the negative social conditions and risk behaviors should improve success. There are multiple studies testing this hypothesis, including one recently published in the Journal of General Internal Medicine about the impact of stigma on adherence.
"Stigma and adherence are strongly associated," says Jennifer Sayles, MD, MPH, author of the paper on stigma and adherence. Sayles is medical director in the Office of AIDS Programs and Policy for the Los Angeles County Department of Public Health in Los Angeles, CA. Sayles also is an assistant professor at the University of California - Los Angeles School of Medicine.
"What we found was that stigma seemed to have a really strong association with people having difficulty accessing medical care," Sayles says. "People who experienced high levels of stigma reported four times the odds of reporting poor access to medical care."
Stigma's role in nonadherence typically isn't addressed in adherence interventions, Sayles notes.
It's important to explore stigma's role with medication adherence and specific interventions, she adds.
Adherence interventions focusing on social support could be designed the way some HIV clinics targeting high-risk populations have integrated primary care services with social support/case management services, says Donald Gardenier, DNP, FNP-BC, a nurse practitioner, assistant professor, and clinical program director in the division of general internal medicine at Mount Sinai School of Medicine in New York, NY.
Gardenier works with an HIV population that includes people with psychiatric and substance use issues, both of which are traditional reasons for poor adherence.
The clinic provides social support for HIV clients with the goal of boosting treatment adherence, Gardenier says.
"What social support research shows in the HIV world is that social support correlates with adherence so that folks with more social support are the folks who adhere better to their medications," he says.2
HIV antiretroviral therapy adherence is one of the areas where there's an interface between the biomedical community, research, and psychology, Huh says.
Some things that do help are treating underlying barriers, such as treating depression, providing social support, creating a friendship network or buddy system, Simoni says.
"The whole next generation of research has to be that we made a toolkit, did an assessment of what people needed, and we matched them up," Simoni says. "It's a much more complex study, but it reflects better what will happen in a real world clinic situation."
Reference
- Simoni JM, Huh D, Frick PA, et al. An RCT of peer support and pager messaging to promote antiretroviral therapy adherence and clinical outcomes among adults initiating or modifying therapy in Seattle, WA, United States. JAIDS. 2009;10.1097(e-publication).
- Gardenier D, Andrews CM, Thomas DC, et al. Social support and adherence: differences among clients in an AIDS Day Health Care Program. J Assoc Nurses AIDS Care. 2009;(e-publication).
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