The major set of HIV/AIDS guidelines in the US, from the Department of Health and Human Services’ (HHS) Panel on Antiretroviral Guidelines for Adults and Adolescents, were last updated in late 2011, the primary change being a recommendation that patients with HIV start anti-retroviral therapy (ART) earlier, when they have an AIDs-defining illness or their CD4 count is less than 350 to 500 cells/mm3. 1 While the HHS guidelines are comprehensive, there are still areas that they do not cover extensively. One such topic is how to retain HIV-positive patients in care.
The reality is that only 69% of people diagnosed with HIV in the United States currently receive care and just 59% actually remain in care over the long term.2 This no doubt contributes to the fact that fewer than a third (28%) of people with HIV in the US achieve complete viral suppression with treatment.3 Dropping out of care or not receiving care increases the risk of viral transmission, as well as the risk of developing resistance to any ART the patient initially received.1
New recommendations from the International Association of Physicians in AIDS Care (IAPAC) address that topic. The IAPAC represents more than 17,000 physicians and allied health professionals in more than 100 countries. In 2011, it convened a panel to develop evidence-based guidelines to “optimize entry into and retention in care and ART adherence” and to monitor these processes. The guidelines were presented at the 19th Conference on Retroviruses and Opportunistic Infections in early March <Link to highlights article> and published simultaneously
in the Annals of Internal Medicine.
The guideline authors admit that, although they did their best to base their recommendations on the evidence, in many instances such evidence did not exist and they had to rely on professional experience while identifying research needs.
Their key recommendations follow:
• All individuals with HIV should be monitored systematically for entry into HIV care. This is defined as a visit with an HIV care provider authorized to prescribe ART.
• All patients with HIV should be monitored systematically for retention in HIV care. Options for monitoring retention include visit adherence, gaps in care, visits per interval of time, surveillance, medical records, and administrative databases. The increasing use of electronic medical records should make this easier over time.
• All patients with a new HIV diagnosis should receive brief, strengths-based case management. This recommendation is based on the Antiretroviral Treatment and Access Study, which evaluated entry into and retention in care at several US sites. Researchers compared case-based management sessions with passive referrals for care. The study found that significantly more patients in the case-based arm saw a healthcare professional for HIV care at least once in 6 months (78% vs 60%) and at least twice within 12 months (64% vs 49%) than those receiving passive referrals.4
• Consider intensive outreach for individuals who do not receive medical care within 6 months of a new HIV diagnosis, possibly with peer or paraprofessional navigators. Such navigators are trained to help HIV-positive patients access and manage the health care system, which can be quite overwhelming. One study of 1,100 patients who were not consistently receiving medical care found that using navigators not only increased the number of visits to healthcare professionals, but also the percentage of individuals with undetectable viral levels at 1 year.5
• Ask patients about adherence (self-reported adherence) at all visits. Using validated tools (asking patients specific questions about their adherence in the past week or month) is associated with actual adherence based on viral levels.
• Use pharmacy refill data to monitor adherence if patients do not automatically receive medication refills. However, drug concentrations in biological samples, pill counts, and electronic drug monitors are not recommended.
Many of the group’s recommendations for improving adherence to ART follow those in the HHS panel guidelines, includin:
• once-daily regimens for treatment-naive patients beginning ART and treatment-experienced patients who are receiving more complicated regimens;
• fixed-dose combinations to reduce pill burden;
• reminder devices and communication technologies to improve adherence (even texting weekly check-ins from the clinic with telephone follow up can help);6 and
• providing education and counseling, preferably on a one-to-one basis.
In settings with limited resources, the guidelines suggest using nurse- or community-based care. Case management support should be provided for social and environmental challenges such as housing and transportation needs that may interfere with adherence, they add, as well as for patients with comorbidities such as substance abuse and mental health disorders that can also impact adherence to medication and retention in care.