Patient-reported Reasons for Stopping Care or Switching Clinics in Zambia: A Multisite, Regionally Representative Estimate Using a Multistage Sampling-based Approach in Zambia

Abstract

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.

The revolving door of HIV care: Revising the service delivery cascade to achieve the UNAIDS 95-95-95 goals

“…With this information, targeted (and, optimally, generalizable and scalable) interventions can be introduced that will (1) identify people at greatest risk of disengagement and help support their retention in care (i.e., minimize disengagement); (2) rapidly detect people who appear to have disengaged, confirm their status, and facilitate their return to care as needed (i.e., reverse disengagement that has already occurred or identify silent transfers and remove duplicate charts within the record system); and (3) target different interventions to individuals depending on whether they have been in a stage of the cascade before. Such work has already been conducted in Zambia [ 28 , 29 ] and South Africa [ 30 ] and could provide a foundation for efforts in other settings.…”

“…Utilizing the proposed cyclical cascade as a framework for supporting program management will require data that are challenging to collect at a routine, programmatic level. People who discontinue care are often difficult to trace, but there are a few accurate reports of the proportions of ART initiators who were previously on treatment that include their characteristics or reasons for previous default and what it would take for them to return to care [ 28 , 33 ]. Individual-level data like these that cover the entire cyclical cascade are required to develop and target interventions that will minimize exit and facilitate reentry along the continuum of care.…”

Availability and experiences of differentiated antiretroviral therapy delivery at HIV care facilities in rural Zimbabwe: a mixed‐method study

“…Stigma is known to undermine adherence to ART and retention in care [26][27][28], thus concerns around privacy and disclosure need to be addressed while implementing any type of differentiated ART delivery. In our study, the confidentiality and privacy concerns highlighted the advantages of individual and facility-based ART delivery models, such as fast-track, over group-based and community-based models.…”

Future directions for HIV service delivery research: Research gaps identified through WHO guideline development

“…Several studies have described the most common reasons for disengagement from care either before or after initiating ART [25][26][27][28]. Research is needed to tailor support that responds to these drivers to minimize disengagement and support reengagement at different stages along the continuum of care.…”