Retention in HIV Care: The Scope of the Problem

Bruce D. Agins, MD, MPH


July 30, 2012


Retention is a pivotal component within the continuum of HIV services: It provides the critical balance between the complex processes of linkage to/re-engagement with care and achieving the desired outcome of viral load suppression. To receive the optimal benefits of antiretroviral therapy, people living with HIV must successfully engage in care by an experienced healthcare provider who can deliver effective HIV primary care and prescribe antiretroviral therapy or who can coordinate with another provider to consult on treatment decisions. Successful continuous care also involves monitoring viral load to determine whether changes in treatment regimens are necessary as well as vigilance regarding complications that might interfere with successful therapy. Ultimately, long-term HIV care involves skilled HIV-specific care that is coordinated within the constellation of comprehensive preventive and chronic healthcare services.

This seemingly simple activity, namely regular visits to a clinic at an interval that is appropriate for the individual, is paradoxically complex. Drivers that influence whether a person living with HIV is engaged in regular care include challenges in managing housing, work, childcare, and transportation, as well as an attitude that might reflect a belief or preference that a clinic visit is not necessary or not a priority. Individual providers and the systems in which they work contribute other factors: limited hours of access, unfriendly attitudes, long waiting times, insensitivity to need for privacy, and failure to follow up on patients who do not show. Finally, the lack of supportive services to address other social or emotional barriers to care, such as mental illness and substance use, is a major contributor to poor retention because it undermines the stability that permits regular engagement in care.


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