Guidelines for Getting Newly Diagnosed Patients Into Care and Keeping Them on Treatment

Table 1 adapted from 'Guidelines for Improving Entry Into and Retention in Care and Antiretroviral Adherence for Persons with HIV,' published in the Annals of Internal Medicine.
Table 1 adapted from "Guidelines for Improving Entry Into and Retention in Care and Antiretroviral Adherence for Persons with HIV," published in the Annals of Internal Medicine.
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Guidelines, guidelines, guidelines. Guidelines on treatment, guidelines on prevention, guidelines on disease state management -- there are many guidelines that help health care providers in the complex decision of when to start treatment for HIV and what medication combinations to use. Many countries and many agencies issue their own guidelines, based on expert panel reviews of the best scientific literature and evidence-based practices. Antiretroviral medications are increasingly effective and better tolerated, but it has been clear for many years that adherence is critical to success.

In this week's Annals of Internal Medicine, an expert panel convened by the International Association of Physicians in AIDS Care (IAPAC) published guidelines on entry into and retention in care and adherence to HIV medications. Dr. Melanie Thompson, clinician scientist from the AIDS Research Consortium of Atlanta and contributor to, was the lead author of the paper.

So why pay attention to a new panel and new guidelines? "These guidelines are different," Thompson says. "There is a large body of literature having to do with adherence, but [it's] never systematically evaluated or interpreted." IAPAC President José M. Zuniga, stated that "guidelines to date have given considerable emphasis to routinizing HIV testing and management of antiretroviral therapy (ART). People living with HIV, however, cannot benefit from advances in HIV treatment unless they enter care, are retained in care, and can take ART with high levels of adherence."

In my clinical experience, patients who engage in care and are willing to take medications (and have health systems that provide continuous access to care) are generally doing very well. Indeed, among these populations, the horrors of the pre-HAART era such as treatment failure, emerging multi-drug resistance, and the progressive march of immune suppression and opportunistic infections has largely disappeared. Nevertheless, even in the high-income environment of the U.S., many people don't know their HIV status, and even once tested, many people fail to engage in care or stay in care. Many factors affect this situation, including stigma, discrimination and education.

The IAPAC panel recommends the systematic monitoring of entry into and retention in care, with intensive outreach for those not engaged in care within six months of their initial diagnoses.

A large part of the guidelines focuses on tools to improve adherence, including strong recommendations for routine monitoring of self-reported adherence and the use of interactive communication technologies. Thompson says: "Clinicians should evaluate adherence by self-report. This is not done as often as it should.

"There is a robust literature from resource-limited settings on using electronic adherence tools. Some of these lessons may apply to resource-rich locations. When there is an interactive adherence component, there is a more robust response. When there isn't a human interaction, then it's not as engaging."

Patient education plays an important part in the recommendations. There is a strong emphasis on one-on-one as well as group adherence counseling, using multidisciplinary approaches. According to Thompson, "the educational component is something that can be implemented at all levels of HIV care and support."

Lessons on retention in care and adherence come from many clinical settings. "We draw from literature from diverse settings," Thompson says. "It's clear that implementation of some of the recommendations would require additional resources. Cost effectiveness research needs to be done. It's interesting that the recommendations that come out of some of the research that comes out of resource-limited literature are fully applicable to resource-rich settings, and sometimes the reverse is true."

The panel also addressed many issues related to special patient populations (substance dependency, pregnancy, mental health, incarceration) with key recommendations that are straightforward, but not broadly implemented.

What's the takeaway? "There are messages at every different level of care," Thompson says "There are some very basic things that could make a big difference. In many areas, there is no systematic monitoring of entry or retention in care. Without monitoring the processes, we can't intervene when they're suboptimal. It sometimes can be difficult, even in the U.S., to identify newly diagnosed patients who have not gotten into a care setting. These are the patients who need additional interventions and monitoring from the care system."

In our clinic and nonprofit care program in Colorado, we recognize the difficulty of identifying patients at risk for loss to follow up or suboptimal adherence. The evidence-based interventions suggested by the panel are ones that can be implemented by care provider and AIDS-service organization alike. Thompson reminds us of the central issue: "If you can't get people into care and retain them into care, you can't get them on drugs; then the drugs aren't really going to work."