Patient-reported Reasons for Stopping Care or Switching Clinics in Zambia: A Multi-site, Regionally Representative estimate using a multi-stage sampling-based approach in Zambia.

Background Understanding patient reported reasons for lapses of retention in HIV treatment can drive improvements in the care cascade. A systematic assessment of outcomes among a random sample of patients lost to follow up (LTFU) from 32 clinics in Zambia to understand the reasons for silent transfers and disengagement from care was undertaken. Methods We traced a simple random sample of LTFU patients (>90 days from last scheduled visit) as determined from clinic-based electronic medical records from a probability sample of facilities. Among patients found in person, we solicited reasons for either stopping or switching care and predictors for reengagement. We coded reasons into structural, psychosocial and clinic based barriers. Results Among 1751 LTFU patients traced and found alive, 31% of patients starting ART between July 1 2013 and July 31 2015 silently transferred or were disengaged (40% male, median age 35 years, median CD4 level 239 cells/ul), median time on ART at LTFU was 480 days (IQR: 110-1295). Among the 544 patients not in care, the median prevalence for patient reported structural, psychosocial and clinic-level barriers was 27.3%, 13.9% and 13.4% respectively, and were highly variable across facilities. Structural reasons, including, "relocated to a new place" were mostly cited amongst 289 patients who silently transferred (35.5%). We found that men were less likely to reengage in care than women (OR: 0.39; 95% CI: 0.22-0.67; p-value: 0.001). Conclusion Efforts to improve retention of patients on ART may need to be tailored at the facility level to address patient reported barriers.