title: "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.
abstract: 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%).
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA. pbraitstein@yahoo.com
authors.forename: Paula
authors.initials: P
authors.lastname: Braitstein
authors.forename: Julia
authors.initials: J
authors.lastname: Songok
authors.forename: Rachel C
authors.initials: RC
authors.lastname: Vreeman
authors.forename: Kara K
authors.initials: KK
authors.lastname: Wools-Kaloustian
authors.forename: Pamela
authors.initials: P
authors.lastname: Koskei
authors.forename: Leahbell
authors.initials: L
authors.lastname: Walusuna
authors.forename: Samwel
authors.initials: S
authors.lastname: Ayaya
authors.forename: Winstone
authors.initials: W
authors.lastname: Nyandiko
authors.forename: Constantin
authors.initials: C
authors.lastname: Yiannoutsos
mesh_terms: D002648:Child; D054540:Child, Orphaned; D002675:Child, Preschool; D005260:Female; D015658:HIV Infections / Q000453:epidemiology* / Q000628:therapy*; D006801:Humans; D007223:Infant; D007630:Kenya / Q000453:epidemiology; D059012:Lost to Follow-Up; D008297:Male; D011287:Prejudice; D012424:Rural Population; D014505:Urban Population