Tracing People Living With Human Immunodeficiency Virus Who Are Lost to Follow-up at Antiretroviral Therapy Programs in Southern Africa: A Sampling-Based Cohort Study in 6 Countries

Abstract

Background Attrition threatens the success of antiretroviral therapy (ART). In this cohort study, we examined outcomes of people living with HIV (PLHIV) lost to follow-up (LTFU) 2014-2017 at ART programs in Southern Africa. Methods We confirmed LTFU (missed appointment for ≥60 or ≥90 days, according to local guidelines) by checking medical records and used a standardized protocol to trace a weighted random sample of PLHIV who were LTFU in eight ART programs in Lesotho, Malawi, Mozambique, South Africa, Zambia and Zimbabwe, 2017-2019. We ascertained vital status and identified predictors of mortality using logistic regression, adjusted for sex, age, time on ART, time since LTFU, travel time, and urban or rural setting. Results Among 3,256 PLHIV, 385 (12%) were wrongly categorized as LTFU and 577 (17%) had missing contact details. We traced 2,294 PLHIV (71%) by phone calls, home visits or both: 768 (34% of 2,294) were alive and in care, including 385 (17%) silent transfers to another clinic; 528 (23%) were alive without care or unknown care; 252 (11%) had died. Overall, the status of 1,323 (41% of 3,256) PLHIV remained unknown. Mortality was higher in men than women, higher in children than in young people or adults, higher in PLHIV who had been on ART <1 year or lost >1 year, living further from the clinic or in rural areas. Results were heterogeneous across sites. Conclusions Our study highlights the urgent need for better medical record systems at HIV clinics and rapid tracing of PLHIV who are LTFU.

Global HIV mortality trends among children on antiretroviral treatment corrected for under‐reported deaths: an updated analysis of the International epidemiology Databases to Evaluate AIDS collaboration

“…Mortality rates in 2017 were an average 60% and 73% lower than in 2005, in and outside of Africa, respectively, after controlling for individual characteristics, and with some variation by age, region and ART duration. However, our adjusted analysis, using novel IeDEA tracing study data [11,12], suggests that analyses using only routine programme data may substantially underestimate mortality. The aggregate observed in mortality estimates in our and other studies [24] suggest that guideline and programme implementation changes have improved child outcomes.…”

“…We also utilized data from a recent IeDEA tracing study in six treatment programmes in five countries (Zambia, Malawi, Zimbabwe, Lesotho and Mozambique) in southern Africa. From the traced sample of 3256 persons classified as LTFU by participating programmes [11,12], we used the subsample of CHIV aged younger than 15 years, who had not visited the clinic for at least the previous 120 to 180 days, depending on local definitions of LTFU. The children's outcomes were determined using phone calls and home visits.…”

“…It is recognized that retention in programmes remains a challenge in Africa [25,26], thus, a key limitation to the accurate estimation of mortality rates from data collected by treatment programmes is the possibly different but unobserved mortality in those considered LTFU. Reasons for LTFU are diverse, including that some patients are in fact still participating in the same or another programme, but records do not accurately reflect this [11]. Importantly, some deaths may not be recorded in CHIV who are mistakenly considered LTFU [27,28].…”

“…In this study, we estimated all-cause mortality rates and investigated their temporal trends among CHIV younger than 15 years on ART, during 2004 to 2017, in multiple regions within and outside of Africa. Unique to this analysis are the two distinct data sources: for all regions, we used routinecare IeDEA observational data from participating treatment programmes; for southern Africa, we additionally used novel IeDEA data from a recent tracing study that determined outcomes in a sample of CHIV considered LTFU [11,12]. The second data source provided insights into deaths that are potentially missed by programmes.…”

Brief Report: Mortality After Loss to Follow-Up—A Linkage Study of People Living With HIV in Thailand and Malaysia

“…1,2 In recent years, up to 40% of those LTFU in the African region were found to have died. 3,4 Studies from the Australian HIV observational database found the LTFU rate to be 3.9/100PYS. Linkages with the Australian National Death Index revealed a subsequent mortality rate of 8.6% among those LTFU.…”