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

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). 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. (c) The Author 2015. Published by Oxford University Press for the Infectious Diseases Society of America. All rights reserved. For permissions e-mail journals.permissions@oup.com.