Improving Retention in HIV Care in Resource-Limited Settings

Elvin H. Geng, MD, MPH


December 11, 2012

Barriers to Retention in HIV Care in Resource-Limited Settings

For HIV-infected patients, retention in care is a minimum necessary condition for maintaining or restoring health. Of the 33 million persons living with HIV/AIDS, 23 million reside in sub-Saharan Africa, nearly 5 million in Asia, and 1.6 million in Latin America and the Caribbean.[1] In these resource-limited settings, poverty, poor transportation infrastructure, and overburdened health systems all pose special challenges to retention. Yet, tremendous progress has been made: More than 7 million persons in resource-limited settings are on antiretroviral therapy (ART); day-to-day medication adherence is as good as, if not better than, in industrialized settings; and to date, more than 2.5 million lives have been saved.[2] Securing these successes depends increasingly on retaining patients in care over the coming years.

The importance of retention is heightened in resource-limited settings. Engaging patients with high CD4 levels allows prompt initiation of ART when CD4-based thresholds are reached and before symptomatic opportunistic infections can contribute to poor outcomes. Indeed, for patients who present with low CD4 levels and symptomatic disease, ART initiation within 2 weeks can reduce mortality and incident AIDS by 50% or more.[3,4] For those already on ART, CD4-based monitoring is often a poor identifier of virologic failure, and such failure is discovered only after delay; ongoing engagement can minimize the risk for virologic failure and attendant longer exposure to immunologic deterioration and development of drug resistance.

Structural factors -- that is, factors related to the underlying economic and material conditions of life -- are major barriers to retention in care in Africa. Three quarters of Africans live in rural settings, and transportation is often difficult to find or expensive. For example, in Uganda, the per capita income is US$25 per month, but it can cost as much as US$10 or more to get to clinic in rural areas.[5] In studies of patients who failed to start ART in Uganda and Malawi despite treatment eligibility or those who dropped out of care after starting ART, approximately one half reported inability to find or afford transportation.[6,7] In addition, food insecurity can make prioritizing costly healthcare difficult[8]; opportunity costs, work, and child-care responsibilities are also commonly reported barriers.[9] Finally, political unrest has been shown to disrupt patients' ability to be retained in chronic care: Postelection violence in Kenya in 2008 led to documented interruptions in care and treatment failure in Kenyan programs.[10]

At the point of contact between the healthcare system and the patient, operational barriers can impede retention of otherwise motivated patients. Providers can see up to 40 patients a day and wait times can be 4-5 hours, but face-to-face time between patients and clinicians can be as little as 2-3 minutes.[11,12] Inevitable conflicts between patients seeking care and staff who are trying to maintain order have been reported. In an qualitative study by Dr. Norma Ware, in which patients lost to follow-up were interviewed about their experiences,[13] statements from a 26-year-old female patient in Uganda capture well the contingencies of life, provider burnout, and interpersonal conflict:

At times, you have missed your appointment date [in this case, owing to unexpected death of a loved one], and when you come back, the doctor looks at you with such a bad eye that you even fear explaining more to her. She tells you, "Stop disturbing me, today is not your appointment date," and she stands and walks away, leaving you there alone. At times I do not blame them; maybe they are hungry or tired. If they could start providing lunch to the doctors at the clinic and have many doctors so that they do not have to be overworked, maybe this would also help.

Finally, fear and stigma about HIV remain common and are important barriers to retention. In some settings, patients turn to alternative therapy or spiritual healing instead of lifelong ART.[14] For example, a well-known treatment known as "kikombe cha dawa" (meaning "cup of medicine" and referring to the efficacy of the single-cup dose of the brew), continues to draw thousands of HIV-positive patients to visit a healer called "Babu" in Loliondo, Tanzania.[15]