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Understanding reasons for and outcomes of patients lost to follow-up in antiretroviral therapy programs in Africa through a sampling-based approach
Global Health Sciences Literature Digest
Published April 21, 2010
Journal Article

Geng EH, Bangsberg DR, Musinguzi N. 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. 2009 Sep 10.

In Context

In resource poor settings, particularly sub-Saharan Africa, high loss to follow-up of HIV patients is problematic. Between 15%-40% of patients may become lost to follow-up in the first year of treatment.(1, 2) Most evaluations have focused on determining if lost clients have died,(3) and few have tried to find and interview patients who do not return to clinic.(4)


To characterize reasons for and outcomes of patients lost to follow-up from HIV care in Uganda.


The setting is a catchment area of a university-based clinic in Mbarara District, western Uganda. The district is 95% rural.


Sample of patients lost to follow-up from an HIV treatment cohort.


Adult patients who newly initiated antiretroviral therapy (ART) and were then lost to follow-up, defined as not having been seen at clinic for six months, and for whom vital status (alive or dead) was not already known.


Patients lost to follow-up were identified from the database each month. More patients were lost each month than trackers could look for, so that only a sample of patients was sought. Efforts were made to locate and speak directly to the missing patient, or to obtain information from close informants on vital status, cause of death, clinical transfer, and other information. Demographic and clinical information were obtained from medical records.


Of 3628 HIV-infected adults newly initiating ART from 2004-2007, 829 were lost to follow-up. The median time from last clinic visit to tracking was 11.6 months, and the median distance from residence to clinic was 33 km. The cumulative incidence of loss to follow-up was 16% during year 1, 30% during year 2, and 39% during year 3. Of the 829 people lost to follow-up, a sample of 128 (15%) was sought. Of these clients, 17 (13%) were not found, 32 (25%) had died, and 79 (62%) were alive; 48 of those alive were directly interviewed. The primary reasons for not returning to the clinic were lack of transportation (50%), distance (42%), lack of money (35%), work (27%), and child care commitments (22%). Of the 48 interviewed, 40 had been to a different clinic in the last three months, and 34 (71%) had taken ART in the last 30 days. Multivariable analysis revealed the following to be independently associated with death among people lost to follow-up: increasing age (per 10 year), (hazard ratio [HR]=2.0, 95% confidence interval [CI]: 1.1-3.8, P=0.03); central nervous system syndrome (HR=2.9, 95% CI: 1.1-7.4; P=0.03); low blood pressure (HR=3.0, 95% CI: 1.2-7.7; P=0.02); higher CD4 cell count prior to ART (per 50 cells/mL; (HR=0.6 , 95% CI: 0.4-0.9; P=0.02).


In this study, loss to follow-up was nearly 40% at three years. Among participants who were interviewed, the most common reasons for not returning to the clinic were social and structural, including lack of transportation, distance to the clinic, and financial, work and child care responsibilities. The authors conclude that addressing these factors will be more important for improving follow-up than individual-based psychosocial or education interventions. About a quarter of patients lost to follow-up died, but of those remaining alive, two thirds were receiving care in another health facility.

Quality Rating

This is good quality study. Some questions remain as to whether the persons tracked were truly representative of the entire sample of those lost to follow-up, as only 15% were tracked, and of those, only 50% were interviewed A statistical evaluation of differences (socioeconomic status, distance, demographic characteristics) between those who were sought and those who were not, would have been helpful.

Programmatic Implications

This study indicates that structural and social factors, particularly related to transportation and child- and work-related responsibilities, often determine whether patients return to HIV care and treatment, perhaps more than their clinical status. Alternative methods of providing care in rural settings, such as satellite clinics or home-based programs, should be explored. Because a substantial number of patients lost to follow-up were seeking care elsewhere, finding a way to provide referrals and clinical records is important. It would be useful for other clinics with high loss to follow-up to perform similar studies to identify problems that could be addressed before patients decide not to return.


  1. Stringer JS, Zulu I, Levy J, et al. Rapid scale-up of antiretroviral therapy at primary care sites in Zambia: feasibility and early outcomes. JAMA 2006;296:782-93.
  2. Rosen S, Fox MP, Gill CJ. Patient retention in antiretroviral therapy programs in sub-Saharan Africa: a systematic review. PLoS Med 2007;4:e298.
  3. 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;300:506-7.
  4. 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;47:101-7.