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

Elvin H. Geng, Thomas A. Odeny, Rita Lyamuya, Alice Nakiwogga-Muwanga, Lameck Diero, Mwebesa Bwana, Paula Braitstein, Geoffrey Somi, Andrew Kambugu, Elizabeth Bukusi, Megan Wenger, Torsten B. Neilands, David V. Glidden, Kara Wools-Kaloustian, Constantin Yiannoutsos, Jeffrey Martin

Research output: Contribution to journalArticle

54 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)935-944
Number of pages10
JournalClinical Infectious Diseases
Volume62
Issue number7
DOIs
StatePublished - Apr 1 2016

Keywords

  • Africa
  • antiretroviral therapy
  • loss to follow-up
  • retention

ASJC Scopus subject areas

  • Microbiology (medical)
  • Infectious Diseases

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    Geng, E. H., Odeny, T. A., Lyamuya, R., Nakiwogga-Muwanga, A., Diero, L., Bwana, M., Braitstein, P., Somi, G., Kambugu, A., Bukusi, E., Wenger, M., Neilands, T. B., Glidden, D. V., Wools-Kaloustian, K., Yiannoutsos, C., & Martin, J. (2016). 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. Clinical Infectious Diseases, 62(7), 935-944. https://doi.org/10.1093/cid/civ1004