1. Engagement in Care for HIV-infected Patients in East Africa East Africa International Epidemiologic Databases to Evaluate AIDS Investigator’s Meeting, Nyeri Kenya May 16-17, 2011

2. Thomas Odeny, Charles Kibaara, George Agengo Lameck Diero, Elyne Rotich, Daniel Ochieng, Paul Ayuo, Paula Braitstein Geoffrey Somi, James Juma, Rita Lyamuya Mwebesa Bwana, Winnie Muyindike, Elvin Geng Alice Muwanga, Andrew Kambugu, Philippa Easterbrook, Yuka Manabe UCSF: Jeffrey Martin, Craig Cohen Indiana: Kara Wools Kaloustian, Constantin Yiannoutsos

3. Effectiveness of ART Services and Engagement in Care The effectiveness of ART depends on rapid engagement in care sustained over time – ART eligible: failure to initiate promptly can magnify mortality – On ART: failure of retention quickly abrogates benefits Medication adherence among patients in Africa is excellent – Failures of engagement – failure to initiate and failure to retain in care – may represent the major barrier to optimal effectiveness of public health ART services

4. Assessing Engagement and Loss to Follow-up Loss to follow-up limits understanding of engagement in care – Number of deaths – Timing of deaths is unknown – For those awaiting ART, starts at other sites – Silent transfers A strategy to manage the impact of losses to follow-up is needed to intelligently evaluate engagement in care in the IeDEA Consortium

5. AUG 7 AUG 21AUG 29 ART initiation Nearly continuous vomiting, headache, fever and “mulloscum” on the face. Given amoxicillin, TB suspected. Patient died, but no one at the clinic knew, and considered loss to follow-up until tracking later. 26 year old woman - CD4 of 27 /ul Completed counseling and ready to start ART Complains of headache and nausea Nevirapine and zidovudine/lamivudine Continues to have headache and nausea, given panadol SEP 5

6. ART Start 2 weeks 6 weeks Patient died of pneumonia at nearby hospital 2 week follow- up visit, feels well No problems 42 year old man, completed adherence counseling. CD4 count of 50 /ul PPE on exam Works as a driver 10 weeks Missed visit 40 weeks Reported to have died by the wife

7. ART Start 2 weeks 6 weeks Missed visit 33 year old man, attended one counseling session CD4 count of 150 /ul - no symptoms He works as a farmer 3 months Lost to follow up 6 months Tracked at home, told tracker he feared to take drugs “pakalast”

8. Died shortly after the last visit Died 8 months after the last visit Alive but disengaged from care Went to a different clinic Assessing Engagement Requires Managing Effects of Loss to Follow-up

9. Engagement in Care and Surivival The first patient never disengaged with care. – Continued engagement in care was simply unable to save her. The second and third patients disengaged from care. – Continued engagement in care could prevent death

10. All Patients in Clinic Patients who Continue in Care Patients lost to follow-up (B) Patients sought by tracking (C) Patients with current care status ascertained by tracking (D)

11. Aims of the Engagement Supplement to East Africa IeDEA Aim 1: Evaluate implementation of a sampling-based approach to estimating failures of engagement in diverse settings in East Africa. – Distinguish failure of engagement from deaths that occur shortly after the last clinic visit. Aim 2: Quantify the magnitude and determinants of two metrics of engagement – ART-eligible patients who fail to initiate (FTI) and patients on ART who fail to be retained in care (FTR). Aim 3: Understand patient reported socio-demographic, geographic, and structural reasons for FTI and FTR

12. Aim 1: Evaluate Sampling Based Approach to Estimating Engagement

13. Aim 1: Qualitative Interviews to Understand the Tracking Process Interviews with patient trackers Understand challenges in diverse environments – Socio-cultural – Operational factors – Technical factors

14. 62% 88% (82%-93%)

15. Aim 2: Estimating Retention in Care and Connection to Care Preliminary Analyses from Mbarara, Uganda

16. Aim 3: Survey to Identify Reasons for Loss to Follow-up

18. Status Update MbararaKampalaFACESAMPATHMorogoro IRBApprovedIn progressSubmitted Hiring of trackers CompletedIn progress Completed Identifying LTFU CompletedIn progressCompletedIn progrssCompleted Form entry interface In progress

19. Conclusions Understanding outcomes above and beyond loss to follow up enriches our understanding of engagement in care Operations research and implementation science both depend on improved understanding of outcomes Improvement of the measurement of important outcomes can strengthen site- specific analyses in the consortium

20. Thomas Odeny, Charles Kibaara, George Agengo Lameck Diero, Elyne Rotich, Daniel Ochieng, Paul Ayuo, Paula Braitstein Geoffrey Somi, James Juma, Rita Lyamuya Mwebesa Bwana, Winnie Muyindike, Elvin Geng Alice Muwanga, Andrew Kambugu, Philippa Easterbrook, Yuka Manabe UCSF: Jeffrey Martin, Craig Cohen Indiana: Kara Wools Kaloustian, Constantin Yiannoutsos NIH: Melanie Bacon, Carolyn F. Williams, Rosemary McKaig Thank you!

21. Retention in Care using Sample-updated Outcomes in Mbarara, 2004-2007 n=2638 (pessimistic)(optimistic)