Return to Normal Life After AIDS as a Reason for Lost to Follow-up in a Community-Based Antiretroviral Treatment Program

Objectives: To understand reasons for lost-to-follow-up (LTFU) from a community-based antiretroviral therapy program in Uganda. Study Design: Retrospective cohort of patients LTFU between May 31, 2001, to May 31, 2010, was examined. A representative sample of 579 patients traced to ascertain their outcomes. Methods: Mixed methods were used. Using "stopped care" as the hazard and "self-transferred" as the comparator, we examined using Cox proportional multivariable model risk factors for stopping care. Results: Overall, 2933 of 3954 (74.0%) patients were LTFU. Of 579 of 2933 (19%) patients sampled for tracing, 32 (5.5%) were untraceable, 66(11.4 %) were dead, and 481 (83.0%) found alive. Of those found alive, 232 (40.0%) stopped care, 249 (43.0%) self-transferred, whereas 61 (12.7%) returned to care at Reach Out Mbuya HIV/AIDS Initiative. In adjusted hazards ratios, born-again religion, originating from outside Kampala, resident in Kampala for <5 years but >1 year, having school-age children who were out of school, non-HIV disclosure, CD4 counts >250 cells per cubic millimeter and pre-antiretroviral therapy were associated with increased risk of stopping care. Qualitative interviews revealed return to a normal life as a key reason for LTFU. Of 61 patients who returned to care, their median CD4 count at LTFU was higher than on return into care (401/mm(3) vs. 205/mm(3), P < 0.0001). Conclusions: Many patients become LTFU during the course of years, necessitating the need for effective mechanisms to identify those in need of close monitoring. Efforts should be made to improve referrals and mechanisms to track patients who transfer to different facilities. Additionally, tracing of patients who become LTFU is required to convince them to return.