1. Retention in care and connection to care among HIV-infected patients receiving ART n Africa: Estimation via a sampling-based approach Elvin Geng 1, David Glidden 1, Mwebesa Bwana 3, Nicolas Musinguzi 3, Nneka Emenyonu 2,3, Winnie Muyindike 3, Isaac Kigozi 3, Katerina Christopoulos 1, Torsten Neilands 1, Constantin Yiannoutsos 4, Steven Deeks 1, David Bangsberg 2,3 and Jeffrey Martin 1 1 University of California, San Francisco, United States; 2 Massachusetts General Hospital, Harvard Medical School, United States; 3 Mbarara University of Science and Technology, Mbarara, Uganda; 4 Indiana University, United States; and the East Africa International Epidemiologic Databases to Evaluate AIDS (IeDEA) Consortium (all). Retention in care is a crucial measure of the effectiveness of the global effort to deliver ART in resource limited settings. Existing estimates of retention have assumed that patients who are lost to follow-up (i.e., who have unknown outcomes) are no longer engaged in care. In the setting of rapid decentralization of ART services, however, patients likely access care within a widening network of clinic sites and therefore this assumption may not be true. Estimating retention in care therefore requires incorporating updated outcomes among those lost to follow-up (i.e., are they still in care). Given the scale of the ART roll-out, ascertaining updated outcomes in all patients lost to follow-up is not always feasible. Conclusions HIV-infected adults starting ART between Jan. 1, 2004 and Sept. 30, 2007 at the Immune Suppression Syndrome (ISS) Clinic in Mbarara, Uganda. Objectives Apply a sampling-based approach in a clinic-based cohort of HIV- infected patients on ART in rural Uganda to estimate retention in care. Implications 829 became lost to follow-up for a cumulative incidence of 16, 30 and 39% at 1, 2 and 3 years respectively. Updated information in 128 (15%) of 829 lost patients was sought though tracking in the community and was obtained in 111 (87%). 79 of 111 patients were found to be alive. In 48 (61%) cases, the patients was directly contacted and in 31(39%) cases an informant was interviewed. Among the 48 patients whom had been lost, tracked and directly interviewed, 35 (73%) indicated they had seen a provider for HIV care in the past 3 months and were taking ART in the 30 days and were considered retained in care. Connection to care was therefore estimated using the cumulative incidence approach where early deaths – defined as within 3 months of last visit -- were considered a competing risk to disconnection from care. Lost patients who had vital status ascertained through tracking were assigned a probability weight to allow them to represent outcomes in all patients lost to follow-up in the corrected analysis. A “naïve” analysis made use only of outcomes known to the clinic passively. “Corrected” analyses incorporated the outcomes of tracking through a probability weight. If an informant was interviewed, we did not ask whether the patient was still engaged in care because this could inadvertently violate the privacy of the patient. We therefore conducted a sensitivity analysis using a “pessimistic” assumption that patients who were alive but not directly interviewed were not retained in care and a “optimistic” assumption that all patients alive remained in care. Socio-demographic and clinical data were obtained during routine clinical care. Patients considered lost to follow-up at the ISS Clinic if they had no visits for at least 3 months after scheduled return. An unselected and consecutive sample of patients lost to follow- up were sought in the community by a tracker on motorcycle to obtain updated information about their engagement in care. Patients with unknown outcomes at the ISS clinic who were found by the tracker were considered to be retained in care if they had seen an HIV provider at a new site in the last 3 months and continued to receive ART in the last 30 days. Retention in care Effect of Sampling to Correct Estimates NaiveCorrected (pessimistic)Corrected (optimistic) Background Patient Characteristics, n=3628 Analyses Tracking Outcomes Retention in care was defined as the fraction patients starting ART who continue to be alive and in care irrespective of which clinic they attend. Connection to care is a novel metric that recognizes that deaths often occur despite recent contact with an HIV clinic : if a death occurs soon after the last clinic visit, it is unlikely to have been due to the cessation of routine HIV care. To our knowledge, this is the first explicit estimate of retention in care rather than retention in clinic. Our corrected estimates of retention are substantially higher than previous estimates. A large fraction of the patients who died were connected to care and died shortly after a clinic visit. In a typical scale up setting where decentralization is occurring rapidly, most patients who were lost to follow-up (i.e. had unknown outcomes) were in care elsewhere. We also found evidence of the process of decentralization: in patients lost from ISS Clinic, those who lived farther away and whose last visit was at a later calendar time were more likely to be retained in care elsewhere. Retention in care and connection to care can be estimated through a sampling-based approach and should be featured as an indictors of effectiveness in global ART delivery effort. Strengthening clinical management of patients can help to close the retention gap because many deaths occur near the time of last visit. Efforts to find and re-engage patients who have become lost from a particular clinic should target patients who are most likely unengaged in care (rather than all lost to follow-up). This will save resources that can be used to maximize the number of patients starting ART. Loss to follow-up is not an informative indicator of program effectiveness because it combines poor outcomes (i.e.., deaths and being out of care) and favorable outcomes (i.e., unascertained transfers) and may therefore be artifactually influenced by decentralization. Patients Measurements Determinants of retention in care in a sample of patients lost to follow up and sought in the community (n=48) FactorMedian (IQR) or n(%) Age, years, (median, IQR)* 35 (30-41) Male Sex, n(%)1408 (39) Pre-therapy CD4 c/ul, (median, IQR) † 117 (48-197) Weight, kg (median,IQR) ‡ 54 (47-60) WHO stage 4, n (%) € 745 (22) ART start year 2004522 (14) 20051,380 (38) 2006930 (25) 2007796 (21) Distance from clinic to residence ¥ 35.4 (8.8-64.7) * Missing in 31, † missing in 1036; ‡ missing in 227, € missing in 1403, ¥ missing in 740 Patient Follow-up Time (yrs on ART) Naïve Corrected (pessimistic) Corrected (optimistic) 183.8% (82.5-85.1)90.9% (88.1-93.8)95.1% (93.3-96.4) 270.8% (68.9-72.6)85.8% (81.9-89.8)93.2% (90.9-95.1) 362.0% (59.3-64.7)83.6% (79.4-87.7)92.6% (89.6-94.6) Time (yrs on ART) Naïve Corrected (pessimistic) Corrected (optimistic) 182.3% (80.9-83.7)85.8%(82.7-88.9)90.9% (87.3-92.7) 268.9% (67.1-70.8)78.9% (75.2-82.6)86.2% (82.9-89.5) 360.1%(57.3-62.7)75.8% (71.6-80.1)84.7% (81.0-88.5).5.6.7.8.9 1 Proportion 0123 Time since initiation of antiretroviral therapy (years) Connection to careRetention in care.5.6.7.8.9 1 Proportion 0123 Time since initiation of antiretroviral therapy (years) Connection to careRetention in care.5.6.7.8.9 1 Proportion 0123 Time since initiation of antiretroviral therapy (years) Connection to careRetention in care Connection to care * adjusted for all other factors in the table