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 (ART) program in Uganda. STUDY DESIGN: Retrospective cohort of patients LTFU between May 31, 2001-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, 2933/3954(74.0%) patients were LTFU. Of 579/2933(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, while 61(12.7%) returned to care at ROM. In adjusted hazards ratios, born-again religion, originating from outside Kampala, resident in Kampala for <five years but > one year, having school-age children who were out of school, non HIV disclosure, CD4 counts >250 cells/mm3 and pre-ART 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/mm3 vs. 205/mm3, P