Understanding reasons for and outcomes of patients lost to follow-up in antiretroviral therapy programs in Africa through a sampling-based approach

Elvin H. Geng, David R. Bangsberg, Nicolas Musinguzi, Nneka Emenyonu, Mwebesa Bosco Bwana, Constantin T. Yiannoutsos, David V. Glidden, Steven G. Deeks, Jeffrey N. Martin

Research output: Contribution to journalArticlepeer-review

227 Scopus citations


Objectives: Losses to follow-up after initiation of antiretroviral therapy (ART) are common in Africa and are a considerable obstacle to understanding the effectiveness of nascent treatment programs. We sought to characterize, through a sampling-based approach, reasons for and outcomes of patients who become lost to follow-up. Design: Cohort study. Methods: We searched for and interviewed a representative sample of lost patients or close informants in the community to determine reasons for and outcomes among lost patients. Results: Three thousand six hundred twenty-eight HIV-infected adults initiated ART between January 1, 2004 and September 30, 2007 in Mbarara, Uganda. Eight hundred twenty-nine became lost to follow-up (cumulative incidence at 1, 2, and 3 years of 16%, 30%, and 39%). We sought a representative sample of 128 lost patients in the community and ascertained vital status in 111 (87%). Top reasons for loss included lack of transportation or money and work/child care responsibilities. Among the 111 lost patients who had their vital status ascertained through tracking, 32 deaths occurred (cumulative 1-year incidence 36%); mortality was highest shortly after the last clinic visit. Lower pre-ART CD4 T-cell count, older age, low blood pressure, and a central nervous system syndrome at the last clinic visit predicted deaths. Of patients directly interviewed, 83% were in care at another clinic and 71% were still using ART. Conclusions: Sociostructural factors are the primary reasons for loss to follow-up. Outcomes among the lost are heterogeneous: both deaths and transfers to other clinics were common. Tracking a sample of lost patients is an efficient means for programs to understand site-specific reasons for and outcomes among patients lost to follow-up.

Original languageEnglish (US)
Pages (from-to)405-411
Number of pages7
JournalJournal of Acquired Immune Deficiency Syndromes
Issue number3
StatePublished - Mar 2010
Externally publishedYes


  • Africa
  • Antiretroviral scale-up
  • Losses to follow-up,monitoring and evaluation
  • Sampling studies

ASJC Scopus subject areas

  • Infectious Diseases
  • Pharmacology (medical)


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