Retention in Care for HIV-Infected Patients in Resource-Limited Settings: Challenges and Opportunities
Elvin Geng, MD, MPH, discusses retention in care as a crucial component of successful HIV care in resource-limited settings and an area in need of better methods of study.
Treatment of HIV infection can be effective only if patients are retained in care over time. However, the global scale-up of HIV services has occurred in settings wherein patients face substantial resource, social, and geographical challenges to their ability to maintain continuous connectivity with the health care system.
Although care and treatment programs in resource-limited settings have reached millions of HIV-infected patients, retention in care (defined as continuous engagement in appropriate medical care) is a critical but challenging aspect of efforts to optimize patient outcomes. For patients on antiretroviral therapy (ART), retention in care is needed to prevent medication interruptions, maintain immunologic benefits, prevent HIV resistance, and monitor the effects of therapy. For patients without indications for immediate initiation of ART, continuous monitoring is needed to prevent development of advanced disease. Additionally, all patients benefit from the secondary prevention messages, counseling, and other ancillary services provided at regular medical visits.
There are widespread challenges, however, to retaining patients in care in resource-limited settings. For example, many Africans reside in rural areas where lack of proximity to public health facilities and inadequate transportation pose major barriers to care.(1) Health care behaviors are often embedded in a network of competing priorities such as work and child care responsibilities that may take precedence.(2) Although ART may be free of charge, ancillary costs can lead to breaks in retention.(3) Stigma related to HIV diminishes a patient's access to social capital--the norms of trust and reciprocity an individual can access to solve day-to-day problems--and also impairs retention in care.(4, 5)
In response to these challenges, HIV care in resource-limited settings must be based on primary care models that emphasize accessibility, sustainability, and continuity rather than the models for treatment of other infectious diseases that are managed in single visits (eg, malaria) or discrete periods (eg, tuberculosis). Alternative models such as community ART stations, group medication pick-up, hybrid models of home- and clinic-based care,(6) subsidization of transportation costs,(7) and streamlined monitoring activities are needed to expand the scope and reach of care to places and people who need it. Public health planners must find a way to meet patients halfway.
Better ways of measuring and studying retention in care to identify the effects of these alternative models of care also must be found. To date, study investigators often consider patients who are lost to follow-up (ie, those for whom outcomes are unknown) to be defaulters (ie, patients who disengage from care) and therefore not retained in care. Yet in the setting of decentralized HIV services, 25-50% of patients who are deemed lost to follow-up may be retained in care elsewhere in the system.(8, 9, 10) Failure to distinguish retention in clinic from retention in care will lead to biased estimates of the magnitude of patient retention and also--through misclassification of the outcome--will lead to inaccurate identification of determinants of retention. A sampling-based approach whereby a representative sample of patients lost to follow-up is tracked and weighted to represent all lost patients is one efficient solution to that problem.(11, 12) Causal methods also must be applied to strengthen the inferential value of studies.
Patient retention is a widespread and long-term challenge to effective treatment of HIV-infected patients in resource-limited settings. Programmatic solutions that are efficient and also extend the reach of care are needed, and they must be accompanied by research methods that ensure we can identify the best practices and quantify their effects.
- Tuller DM, Bangsberg DR, Senkungu J, et al. Transportation costs impede sustained adherence and access to HAART in a clinic population in southwestern Uganda: a qualitative study. AIDS Behav. 2010 Aug;14(4):778-84. PMID: 19283464.
- Geng EH, Bangsberg DR, Musinguzi N, et al. Understanding reasons for and outcomes of patients lost to follow-up in antiretroviral therapy programs in Africa through a sampling-based approach. J Acquir Immune Defic Syndr. 2010 Mar 1;53(3):405-11. PMID: 19745753.
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- Ware NC, Idoko J, Kaaya S, et al. Explaining adherence success in sub-Saharan Africa: an ethnographic study. PLoS Med. 2009 Jan 27;6(1):e11. PMID: 19175285.
- McGuire M, Muyenyembe T, Szumilin E, et al. Vital status of pre-ART and ART patients defaulting from care in rural Malawi. Trop Med Int Health. 2010 Jun;15 Suppl 1:55-62. PMID: 20586961.
- Bupamba MM, Mbatia R, Strachan M, et al. "Ambassadors for adherence": provision of highly effective defaulter tracing and re-engagement by peer educators in Tanzania. In: Program and abstracts of the 17th Conference of the International AIDS Society; July 18-23, 2010; Vienna. Abstract MOAE0303.
- Emenyonu N, Thirumurthy H, Muyindike W, et al. Cash transfers to cover clinic transportation costs improve adherence and retention in care in an HIV treatment program in rural Uganda. In: Program and abstracts of the 17th Conference on Retroviruses and Opportunistic Infections; February 16-19, 2010; San Francisco. Abstract 831.
- Amuron B, Namara G, Birungi J, et al. Mortality and loss-to-follow-up during the pre-treatment period in an antiretroviral therapy programme under normal health service conditions in Uganda. BMC Public Health. 2009 Aug 11;9:290. PMID: 19671185.
- Maskew M, MacPhail P, Menezes C, et al. Lost to follow up: contributing factors and challenges in South African patients on antiretroviral therapy. S Afr Med J. 2007 Sep;97(9):853-7. PMID: 17985056.
- Dalal RP, Macphail C, Mqhayi M, et al. Characteristics and outcomes of adult patients lost to follow-up at an antiretroviral treatment clinic in Johannesburg, South Africa. J Acquir Immune Defic Syndr. 2008 Jan 1;47(1):101-7. PMID: 17971708.
- Geng EH, Emenyonu N, Bwana MB, et al. Sampling-based approach to determining outcomes of patients lost to follow-up in antiretroviral therapy scale-up programs in Africa. JAMA. 2008 Aug 6;300(5):506-7. PMID: 18677022.
- Geng EH, Glidden DV, Emenyonu N, et al. Tracking a sample of patients lost to follow-up has a major impact on understanding determinants of survival in HIV-infected patients on antiretroviral therapy in Africa. Trop Med Int Health. 2010 Jun;15 Suppl 1:63-9. PMID: 20586962.