Matthew Lamb ICAP-NY mrl2013@columbia

1. Use of Patient-Level HIV Care and Treatment Reports for Focused Site Support, Evidence-Based Decision Making, and More! Matthew Lamb ICAP-NY mrl2013@columbia.edu

2. Outline • Brief overview: where the data comes from and how the feedback reports are generated • How is patient-level data useful for clinical, programmatic, and SI purposes? • How to read and use the patient-level feedback reports • Examples of use of patient-level data for epidemiologic research

3. ICAP’s patient-level database Unique databases used in-country by ICAP SA RW TZ ET KY MZ Import and de-identification tool ICAP Patient-Level Database Analyses for abstracts and manuscripts Analysis File (one per country) Country-level reports Adult Pediatric Standards of Care (SOC) Site-level reports Cohort Reports Standards of Care (SOC) Report Creator Today’s focus

4. Patient-level feedback reports

5. Patient-level information is available for 60% of patients ever attending ICAP-supported care and treatment clinics in 4 countries 1 Rwanda totals are through March 2011 2South Africa totals are through March 2010

6. ICAP’s patient-level reports provide one tool to critically evaluate program performance • Country-level reports • Regular data dissemination meetings • Identification of problematic areas and/or sites • Identification of high-performing sites • Tracking trends in program achievement over time • Site-level reports • Preparation for site visits by M&E, clinical, and program staff • Data Quality Assurance • Trends in enrollment and active patient population

7. Patient-level reports are complementary to other information collected for reporting • What proportion of patients are initiating ART at advanced disease stage? Does this differ between sites? • Does most LTF occur before or after ART initiation? • Does the proportion of total program attrition attributable to LTF or recorded death differ substantially between sites? • What proportion of patients are missing records of both CD4+ cell count and WHO staging at enrollment and ART initiation? Does this differ between sites?

8. Country-level reports • Adult Country Report • Pediatric Country Report • Country-level SOC Report

9. Country-level Adult and Pediatric reports: Layout • Summary paragraph • Listing of sites (name and URS ID) contributing to the report • Key characteristics of active patients, by gender • Trends in number of active patients over time and % on ART • Age and gender distribution at enrollment • Between-site comparisons of enrollment characteristics • CD4, WHO Stage, ART eligibility, cotrimoxazole provision, tuberculosis treatment • Between-site comparisons of ART initiation characteristics • CD4, WHO Stage, advanced disease at initiation, regimen characteristics • Patient outcomes after enrollment into HIV care and ART initiation • Recorded Death, LTF, attrition, combined and between-site comparisons

10. Country Reports: Summary Cumulative enrollment in HIV care and on ART Active patients this quarter Active adult patients this quarter Follow-up characteristics of those no longer active (LTF, death, transfer)

11. Country Reports: Site listing SiteID used for the rest of the report

12. Country Reports: Characteristics of Active patients at enrollment into HIV care and ART initiation Overall and separate by gender Patients not returning for a follow-up visit may not have their CD4+ counts recorded

13. Country Reports: Trends in active enrollment over time 74.1% 36.8%

14. Between-site comparisons from Country Reports

15. Country Reports: Advanced HIV infection at ART initiation Percent SiteID

16. Country Reports: Between-site comparison of Death, LTF, and Attrition (LTP)

17. Country Reports: Summary • Provides a useful snapshot summarizing key characteristics of the patient population enrolling into HIV care and initiating ART • Enables a quick means of comparing key characteristics across sites within the same country • Regional reports can also be generated • Very useful for ICAP-NY and in-country clinical, SI, and programmatic staff to assess overall characteristics and differences between sites • More detail on specific sites can be found in the site-level reports…

18. Site Reports • Provide in-depth, site-specific summaries • Useful in preparation for site visits, and to delve deeper into issues identified from the country reports

19. Site Reports: Layout similar to Country Report • Summary paragraph • Trends in new patient enrollment over time and % on ART • Key characteristics of active patients, total and separated by adult/pediatric • Enrollment characteristics • Point of entry, age and gender distribution, CD4, WHO Stage, ART eligibility, cotrimoxazole provision, tuberculosis treatment, anthropometric measures • ART initiation characteristics • CD4, WHO Stage, advanced disease at initiation, regimen characteristics • Patient outcomes after enrollment into HIV care and ART initiation • Outcomes before and after ART initiation • Survival curves

20. Site Reports: new patient enrollment over time shows impact of decentralization

21. Site Reports: Immunologic characteristics at enrollment

22. Site Reports: Patient retention

23. Site Reports: Summary • Gives in-depth detail on characteristics of patients attending a given site, focusing on characteristics at enrollment into HIV care, ART initiation, and retention after these benchmarks • Useful for site visit preparation to identify issues for focused supportive supervision

24. ICAP Standards of Care (SOC) Reports • Calculates ICAP Priority Indicators of HIV care and other Standards of Care from the electronic patient-level databases • Intended to provide information on the quality of HIV care and changes over time • Available as an overall country SOC report and for each site reporting data

25. ICAP Standards of Care (SOC) Reports: Priority Indicators Most recent quarter

26. ICAP Standards of Care (SOC) Reports: Pre-ART Standards of Care

27. ICAP Standards of Care (SOC) Reports: ART Standards of Care

28. ICAP Standards of Care (SOC) Reports: Notes on the Indicators

29. SOC Reports: Summary • Allows us to track progress towards achievement of ICAP Standards of Care over time, and to look more deeply into issues affecting the quality of HIV care • Many SOCs are calculated, such as: • Proportion with CD4 within 1 month of enrollment • Proportion eligible receiving CTX • Proportion initiating ART within 1 month of eligibility • Proportion with CD4 in the last 6 months • And more • Useful in combination with Standards of Care calculated through sampling of clinical records • Comparing results between these will allow us to assess the quality of the electronic patient-level database

30. We welcome suggestions for corrections, edits, and additions! • These reports have evolved over time based on feedback from users • If you see something that doesn’t seem right, please let us know and we can investigate • Also, future ideas for enhancements are in the works • HIV care cascade • Changes to ART eligibility as countries adopt new guidelines • Others?

31. The Automated Reports are available on the URS http://urs2.icap.columbia.edu

32. The Automated Reports are available on the URS http://urs2.icap.columbia.edu

33. Beyond the automated reports … and many more in the pipeline

34. Questions? http://urs2.icap.columbia.edu