Preliminary data from the LTFU Study

1. Preliminary data from the LTFU Study Thursday 23rd Feb 2012 At FACES Conference Hall

2. Objective • To share the preliminary data from the LTFU Study during Client Retention Meeting at Lumumba-FACES Thursday 23rd Feb 2012 At FACES Conference Hall

3. Presentation Outline • Background • Study process • The Study sample • Back on care after tracking • Self transfers out • Reasons for being LTFU Thursday 23rd Feb 2012 At FACES Conference Hall

4. Background • Many patients enrolled in HIV programs become LTFU • As many as 40% at 5 years have unknown outcomes Thursday 23rd Feb 2012 At FACES Conference Hall

5. Background • The total number of LTFU in the CCP of FACES according to the study are x. • We don’t know what happens to these patients Thursday 23rd Feb 2012 At FACES Conference Hall

6. Background Have they: • “Self transferred” to a new clinic? • “Disengaged” – stopped going to any clinic? • Died? Thursday 23rd Feb 2012 At FACES Conference Hall

7. Because at a patient level: • If they have self transferred to another clinic, we want to know why. • We want to update our records as a transfer. • We can use information on why they transferred to improve clinic services. Thursday 23rd Feb 2012 At FACES Conference Hall

8. Because at a patient level: • If they have stopped care all together, we want to provide services and counseling to encourage them to re-enter care. Thursday 23rd Feb 2012 At FACES Conference Hall

9. Because at a patient level: • If they have died, we want to understand why the urgent illness before their death wasn’t identified and treated. • We can use this information to design better clinic services. Thursday 23rd Feb 2012 At FACES Conference Hall

10. Because at a clinic level: If we don’t know what happened to these people we don’t know how our clinic is doing • How many people registered in this clinic have actually died? More than are reported to clinic. • How many people are actually still in care ? More than are reported as transfers to clinic. Thursday 23rd Feb 2012 At FACES Conference Hall

11. Because at a clinic level: To improve care we need to know: • Why do patients stop coming? • Why do patients transfer to other clinics? • How can we support patients in staying in care? • How do we identify and help patients who are at higher risk of death if they default from care? Thursday 23rd Feb 2012 At FACES Conference Hall

12. The sample • Too many people are LTFU to find them all. • A random sampling to represent the LTFU population Thursday 23rd Feb 2012 At FACES Conference Hall

13. The sample and study Area • The is going on in 4 study sites In Kisumu East District: Thursday 23rd Feb 2012 At FACES Conference Hall

14. Who have been doing the LTFU Tracking? • CCHAs attached to the study and had also been doing defaulter tracing in the program. Thursday 23rd Feb 2012 At FACES Conference Hall

15. Tracking process-Ongoing • Involves Intensive tracking of each patient in the sample until an outcome is found in all the sites. • The tracker gets the contact information from the patient’s file at the clinic and tracks • Ask patients or informants the reasons why they are lost to follow up Thursday 23rd Feb 2012 At FACES Conference Hall

16. Tracking success Thursday 23rd Feb 2012 At FACES Conference Hall

17. Some reasons for being LTFU a)Provider related reasons • Many are branded LTFU when they are actually not due to lack of documentation. -2 levels • Care is better at the new clinic Thursday 23rd Feb 2012 At FACES Conference Hall

18. Some reasons for being LTFUa)Provider related reasons….Cont • Afraid to be scolded for missing TCA • Clinic staff nicer at the new site • Did not want to be sent to defaulter class • Avoiding to come with treatment buddies Thursday 23rd Feb 2012 At FACES Conference Hall

19. Some reasons for being LTFU b) Client Related reasons • Family conflicts eg divorce • Family obligations eg ladies who get married • Spending less money on transport cost Thursday 23rd Feb 2012 At FACES Conference Hall

20. Some reasons for being LTFUb) Client Related reasons....conts • Spending less time at the new clinic • New clinic is closer to place of work • Avoiding to meet people who know them at the clinic (Stigma) Thursday 23rd Feb 2012 At FACES Conference Hall

21. Outcome of the study • 182 transferred themselves out Thursday 23rd Feb 2012 At FACES Conference Hall

22. Study Outcome Thursday 23rd Feb 2012 At FACES Conference Hall

23. Case study From Pandpieri Site • Earlier visited as a defaulter- 5home visits • Some times she was not at found at home, when she was found she gave a reason of not being able to come with a treatment buddy • Promised to come back, but did not • Tracked during LTFU study and was convinced to come back to the clinic • Came back 2 days after tracking without a buddy and was sent back again to get a buddy. • Has never come back. Thursday 23rd Feb 2012 At FACES Conference Hall

24. What lessons have we learnt? Thursday 23rd Feb 2012 At FACES Conference Hall

25. ENDAny questions? Thursday 23rd Feb 2012 At FACES Conference Hall