title: Retention in Care and Patient-Reported Reasons for Undocumented Transfer or Stopping Care Among HIV-Infected Patients on Antiretroviral Therapy in Eastern Africa: Application of a Sampling-Based Approach.
abstract: BACKGROUND
  Improving the implementation of the global response to human immunodeficiency virus requires understanding retention after starting antiretroviral therapy (ART), but loss to follow-up undermines assessment of the magnitude of and reasons for stopping care.
  
  
  METHODS
  We evaluated adults starting ART over 2.5 years in 14 clinics in Uganda, Tanzania, and Kenya. We traced a random sample of patients lost to follow-up and incorporated updated information in weighted competing risks estimates of retention. Reasons for nonreturn were surveyed.
  
  
  RESULTS
  Among 18 081 patients, 3150 (18%) were lost to follow-up and 579 (18%) were traced. Of 497 (86%) with ascertained vital status, 340 (69%) were alive and, in 278 (82%) cases, updated care status was obtained. Among all patients initiating ART, weighted estimates incorporating tracing outcomes found that 2 years after ART, 69% were in care at their original clinic, 14% transferred (4% official and 10% unofficial), 6% were alive but out of care, 6% died in care (<60 days after last visit), and 6% died out of care (≥ 60 days after last visit). Among lost patients found in care elsewhere, structural barriers (eg, transportation) were most prevalent (65%), followed by clinic-based (eg, waiting times) (33%) and psychosocial (eg, stigma) (27%). Among patients not in care elsewhere, psychosocial barriers were most prevalent (76%), followed by structural (51%) and clinic based (15%).
  
  
  CONCLUSIONS
  Accounting for outcomes among those lost to follow-up yields a more informative assessment of retention. Structural barriers contribute most to silent transfers, whereas psychological and social barriers tend to result in longer-term care discontinuation.
authors.affiliation: Departmentof Medicine, Division of HIV/AIDS, San Francisco General Hospital, California.
authors.forename: Elvin H
authors.initials: EH
authors.lastname: Geng
authors.affiliation: Kenya Medical Research Institute and the Family AIDS Care and Education Services Program, Nairobi.
authors.forename: Thomas A
authors.initials: TA
authors.lastname: Odeny
authors.affiliation: National AIDS Control Program, Dar es Salaam, Tanzania.
authors.forename: Rita
authors.initials: R
authors.lastname: Lyamuya
authors.affiliation: Infectious Diseases Institute, Kampala, Uganda.
authors.forename: Alice
authors.initials: A
authors.lastname: Nakiwogga-Muwanga
authors.affiliation: US Agencyfor International Development-Academic Model Providing Access to Healthcare Program, Eldoret, Kenya.
authors.forename: Lameck
authors.initials: L
authors.lastname: Diero
authors.affiliation: Mbarara University of Science and Technology, Uganda.
authors.forename: Mwebesa
authors.initials: M
authors.lastname: Bwana
authors.affiliation: US Agencyfor International Development-Academic Model Providing Access to Healthcare Program, Eldoret, Kenya.
authors.forename: Paula
authors.initials: P
authors.lastname: Braitstein
authors.affiliation: National AIDS Control Program, Dar es Salaam, Tanzania.
authors.forename: Geoffrey
authors.initials: G
authors.lastname: Somi
authors.affiliation: Infectious Diseases Institute, Kampala, Uganda.
authors.forename: Andrew
authors.initials: A
authors.lastname: Kambugu
authors.affiliation: Kenya Medical Research Institute and the Family AIDS Care and Education Services Program, Nairobi.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Bukusi
authors.affiliation: Department of Epidemiology and Biostatistics, University of California, San Francisco.
authors.forename: Megan
authors.initials: M
authors.lastname: Wenger
authors.affiliation: Departmentof Medicine, Division of HIV/AIDS, San Francisco General Hospital, California.
authors.forename: Torsten B
authors.initials: TB
authors.lastname: Neilands
authors.affiliation: Department of Epidemiology and Biostatistics, University of California, San Francisco.
authors.forename: David V
authors.initials: DV
authors.lastname: Glidden
authors.affiliation: Division of Infectious Diseases, Department of Medicine.
authors.forename: Kara
authors.initials: K
authors.lastname: Wools-Kaloustian
authors.affiliation: Department of Biostatistics, Fairbanks School of Public Health, Indiana University, Indianapolis.
authors.forename: Constantin
authors.initials: C
authors.lastname: Yiannoutsos
authors.affiliation: Department of Medicine, Division of HIV/AIDS, San Francisco General Hospital, California.|Department of Epidemiology and Biostatistics, University of California, San Francisco.
authors.forename: Jeffrey
authors.initials: J
authors.lastname: Martin
mesh_terms: D000328:Adult; D000351:Africa, Eastern / Q000453:epidemiology; D019380:Anti-HIV Agents / Q000627:therapeutic use*; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D005260:Female; D015658:HIV Infections / Q000188:drug therapy* / Q000453:epidemiology*; D006801:Humans; D059012:Lost to Follow-Up; D008297:Male
chemical_list: D019380:Anti-HIV Agents
keywords: Africa; antiretroviral therapy; loss to follow-up; retention