Wamepotea (they have become lost): Outcomes of HIV-positive and HIV-exposed children lost to follow-up from a large HIV treatment program in Western Kenya

Paula Braitstein, Julia Songok, Rachel C. Vreeman, Kara K. Wools-Kaloustian, Pamela Koskei, Leahbell Walusuna, Samwel Ayaya, Winstone Nyandiko, Constantin Yiannoutsos

Research output: Contribution to journalArticle

63 Scopus citations


Objective: The objective of this study was to identify the vital status and reasons for children becoming loss to follow-up (LTFU) from a large program in western Kenya. Methods: This was a prospective evaluation of a random sample of 30% of HIV-exposed and HIV-positive children LTFU from either an urban or rural HIV Academic Model Providing Access to Healthcare clinic. LTFU is defined as absence from clinic for >6 months if on combination antiretroviral therapy and > 12 months if not. Experienced community health workers were engaged to locate them. Results: There were 97 children sampled (78 urban, 19 rural). Of these, 82% were located (78% urban, 100% rural). Among the HIV positive, 16% of the children were deceased, and 16% had not returned to clinic because of disclosure issues/discrimination in the family or community. Among the HIV exposed, 30% never returned to care because their guardians either had not disclosed their own HIV status or were afraid of family/community stigma related to their HIV status or that of the child. Among children whose HIV status was unknown, 29% of those found had actually died, and disclosure/discrimination accounted for 14% of the reasons for becoming LTFU. Other reasons included believing the child was healed by faith or through the use of traditional medicine (7%), transport costs (6%), and transferring care to other programs or clinics (8%). Conclusion: After locating >80% of the children in our sample, we identified that mortality and disclosure issues including fear of family or community discrimination were the most important reasons why these children became LTFU.

Original languageEnglish (US)
Pages (from-to)e40-e46
JournalJournal of Acquired Immune Deficiency Syndromes
Issue number3
StatePublished - Jul 1 2011



  • Africa
  • HIV
  • losses-to-follow-up
  • mortality
  • pediatrics
  • retention

ASJC Scopus subject areas

  • Infectious Diseases
  • Pharmacology (medical)

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