Abstract
IntroductionPatients who are lost to follow-up (LTFU) while on antiretroviral therapy (ART) pose challenges to the long-term success of ART programs. We describe the extent to which patients considered LTFU are misclassified as true disengagement from care when they are still alive on ART and explain reasons for ART discontinuation using our active tracing program to further improve ART retention programs and policies.MethodsWe identified adult ART patients who missed clinic appointment by more than 3 weeks between January 2006 and December 2010, assuming that such patients would miss their doses of antiretroviral drugs. Patients considered LTFU who consented during ART registration were traced by phone or home visits; true ART status after tracing was documented. Reasons for ART discontinuation were also recorded for those who stopped ART.ResultsOf the 4,560 suspected LTFU cases, 1,384 (30%) could not be traced. Of the 3,176 successfully traced patients, 952 (30%) were dead and 2,224 (70%) were alive, of which 2,183 (99.5%) started ART according to phone-based self-reports or physical verification during in-person interviews. Of those who started ART, 957 (44%) stopped ART and 1,226 (56%) reported still taking ART at the time of interview by sourcing drugs from another clinic, using alternative ART sources or making brief ART interruptions. Among 940 cases with reasons for ART discontinuations, failure to remember (17%), too weak/sick (12%), travel (46%), and lack of transport to the clinic (16%) were frequently cited; reasons differed by gender.ConclusionThe LTFU category comprises sizeable proportions of patients still taking ART that may potentially bias retention estimates and misdirect resources at the clinic and national levels if not properly accounted for. Clinics should consider further decentralization efforts, increasing drug allocations for frequent travels, and improving communication on patient transfers between clinics to increase retention and adherence.
Highlights
Patients who are lost to follow-up (LTFU) while on antiretroviral therapy (ART) pose challenges to the long-term success of ART programs
As a follow-up to our previous papers that determined the proportion of LTFU returned to care through our B2C active tracing [7] and identified the patient characteristics associated with successful tracing [12], we describe the extent to which patients considered LTFU are misclassified as true disengagement from care when they are still alive on ART and explore the reasons for ART discontinuation among those who stop to further improve ART retention programs and policies
Men were more likely than women to discontinue ART due to travel (54% v 41%, p=0.001) while women were more likely to report lack of money for transport compared to men (22% v 14%, p=0.013). This large study from two high-volume public urban ART clinics found that 25% of patients suspected to be LTFU were found alive and on ART when traced
Summary
Patients who are lost to follow-up (LTFU) while on antiretroviral therapy (ART) pose challenges to the long-term success of ART programs. In sub-Saharan Africa, a substantial number of HIV-infected individuals are lost both before [1] and after ART initiation [2,3] Among those considered LTFU, up to 40% of those traced are reported dead [4]. True outcomes of patients considered LTFU do not just include deaths, but may include those with undocumented transfers, uninterrupted therapy due to antiretroviral drugs (ARVs) received from other sources, and brief treatment discontinuations [7,8].
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