Retention in Care and Connection to Care among HIV-Infected Patients on Antiretroviral Therapy in Africa: Estimation via a Sampling-Based Approach

Elvin H Geng,David R Bangsberg,David V Glidden,Steven G Deeks,Nneka Emenyonu,Torsten B Neilands,Jeffrey N Martin,Katerina A Christopoulos,Winnie Muyindike,Constantin T Yiannoutsos,Mwebesa Bosco Bwana,Nicolas Musinguzi,Landon Myer

doi:10.1371/journal.pone.0021797

Abstract

IntroductionCurrent estimates of retention among HIV-infected patients on antiretroviral therapy (ART) in Africa consider patients who are lost to follow-up (LTF) as well as those who die shortly after their last clinic visit to be no longer in care and to represent limitations in access to care. Yet many lost patients may have “silently” transferred and deaths shortly after the last clinic visit more likely represent limitations in clinical care rather than access to care after initial linkage.MethodsWe evaluated HIV-infected adults initiating ART from 1/1/2004 to 9/30/2007 at a clinic in rural Uganda. A representative sample of lost patients was tracked in the community to obtain updated information about care at other ART sites. Updated outcomes were incorporated with probability weights to obtain “corrected” estimates of retention for the entire clinic population. We used the competing risks approach to estimate “connection to care”—the percentage of patients accessing care over time (including those who died while in care).ResultsAmong 3,628 patients, 829 became lost, 128 were tracked and in 111, updated information was obtained. Of 111, 79 (71%) were alive and 35/48 (73%) of patients interviewed in person were in care and on ART. Patient retention for the clinic population assuming lost patients were not in care was 82.3%, 68.9%, and 60.1% at 1, 2 and 3 years. Incorporating updated care information from the sample of lost patients increased estimates of patient retention to 85.8% to 90.9%, 78.9% to 86.2% and 75.8% to 84.7% at the same time points.ConclusionsAccounting for “silent transfers” and early deaths increased estimates of patient retention and connection to care substantially. Deaths soon after the last clinic visit (potentially reflecting limitations in clinical effectiveness) and disconnection from care among patient who were alive each accounted for approximately half of failures of retention.

Highlights

Current estimates of retention among HIV-infected patients on antiretroviral therapy (ART) in Africa consider patients who are lost to follow-up (LTF) as well as those who die shortly after their last clinic visit to be no longer in care and to represent limitations in access to care
ART in Africa are retained after two years — have been conducted from the perspective of individual clinics and have assumed that patients who are lost to follow-up are no longer engaged in care [2,3,4,5,6]
Many deaths occur very shortly after the last visit to clinic. Existing approaches combine these patients with patients who are alive but who disengage from care and consider both as ‘‘not retained.’’ Deaths shortly after the last visit, are more likely due to limitations in the effectiveness of medical care and represent a different problem than disengagement from the clinic after enrollment

Summary

Introduction

Current estimates of retention among HIV-infected patients on antiretroviral therapy (ART) in Africa consider patients who are lost to follow-up (LTF) as well as those who die shortly after their last clinic visit to be no longer in care and to represent limitations in access to care. Many lost patients may have ‘‘silently’’ transferred and deaths shortly after the last clinic visit more likely represent limitations in clinical care rather than access to care after initial linkage. Many deaths occur very shortly after the last visit to clinic Existing approaches combine these patients with patients who are alive but who disengage from care and consider both as ‘‘not retained.’’ Deaths shortly after the last visit, are more likely due to limitations in the effectiveness of medical care (because of limited diagnostic or therapeutic options) and represent a different problem than disengagement from the clinic after enrollment (potentially due to transportation, stigma, and other socio-structural factors). Alternative analytic approaches that are able to distinguish these early deaths after a clinic visit from disengagement from care should be explored

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