1. Concordance of HIV surveillance and medical record data: What do CD4 and viral loads not tell us about linkage to HIV care? Charu Sabharwal, MD MPH Medical Director Epidemiology and Field Services Program Bureau of HIV/AIDS Prevention and Control NYC Department of Health

2. Acknowledgements Sarah Braunstein Rebekkah Robbins Colin Shepard HIV Epidemiology and Field Services Program

3. Background

4. NHAS (July, 2010) - first comprehensive roadmap A more coordinated response to the HIV epidemic Primary Goals for 2015: – Reduce infections – Increase access to care – Reduce health disparities National HIV/AIDS Strategy

5. HIV Continuum of Care Das, Moupali Prevention of HIV Acquisition: Behavioral, Biomedical, and Other Interventions. Medscape 2012

6. HIV Care = outpatient HIV visit with provider authorized to prescribe ART 1 Clinical monitoring/treatment guidelines 2 – Traditionally, 1 st CD4/VL at initial HIV care visit – CD4/VL: every 3-6 months;  frequency after ART initiation CD4/VLs proxy for HIV care [ HIV care visits not reported] Since 2004, CSTE encouraged all states (59 jurisdictions) to report all CD4 and VLs 3 [ New York  2005] Limited comprehensive evaluation of the validity of surveillance data as proxy of HIV care Monitoring HIV Care – CD4/VL 1 Health Resources and Services Administration. The HIV/AIDS Program: HAB Performance Measures Group 1. In; 2009. 2 DHHS Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents. In; 2012. 3 CSTE Position statement 04-ID-07

7. Surveillance traditionally measures linkage by a single event: 1 st reported CD4/VL on/after HIV diagnosis date Accuracy of 1 st CD4/VL 1,2  drawn prior to referral to HIV care. For example, at the time of – Confirmatory testing after + rapid/point-of-care test – Inpatient diagnosis: CD4 impacts treatment decision In New York City: routine medical record (MR) abstraction for linkage to care is not feasible – 3,500 diagnosing providers; 3,000+ HIV cases yearly – Timely linkage – entry into care within 3 months of diagnosis. Local 3 and national measure Measuring linkage to care 1 Bertolli A. et al The Open AIDS Journal 2012,6:131-141. 2 Keller et al. J Acquir Immune Defic Syndr 2013. 3 New York City HIV/AIDS Surveillance Slide Sets. http://www.nyc.gov/html/doh/html/data/epi-surveillance.shtml

8. New York City’s Care Validation Study Validate CD4 and VL tests for persons living with HIV (PLWH) in NYC as proxy measure for HIV care in the first year after diagnosis 1° Objective – evaluate the correspondence between a patients 1 st CD4/VL on/after HIV diagnosis and linkage HIV care

9. Purpose Validate 1 st lab test (CD4/VL) from the diagnosing facility as measure of timely linkage to HIV care Hypothesis: early post-diagnostic lab tests within first 2 weeks are part of diagnostic work-up and not an actual linkage event

10. Methods

11. Selected high-volume HIV diagnosing sites with co-located care (n=24) – Patients with new, confirmed HIV diagnosis in 2009 reported the Registry – Patients who had to linked to care at the same diagnosing facility within 12 months as per the Registry PLEASE NOTE – Even though Surveillance does not require linkage to care at the same site of diagnosis, we did in order to conduct this validation study Study population selection: New York City HIV Registry

12. 3,536 new, confirmed HIV diagnoses among > 13 years in NYC in 2009 1,263 (36%) patients reported from high-volume (> 20 diagnoses) co-located HIV care sites 947 (75%) patients had 1 st CD4/VL reported from co-located site within 12 months of diagnosis eligible for medical record (MR) abstractions 165 (17%) excluded: MR unavailable Figure 1: Final study population 782 (83%) patients Registry (1 st CD/VL) and MR (care visit) data

13. Data Analysis

14. Analytic population (n=782) Linkage within 12 months, per Registry No medical visit groupMedical visit group HIV care visit confirmed by MR Compared the subgroups based on: Key demographic characteristics (age, gender, risk) Proportion concurrently diagnosed with HIV/AIDS (AIDS within 31 days of HIV diagnosis – local definition) Proportion diagnosed on inpatient service Proportion that died within 12 months of diagnosis YESNO

15. Timely linkage to HIV care Compared the proportion who linked to HIV care within 3 months of diagnosis (timely) by Registry (1st CD/VL) vs. MR (care visit)

16. Do 1 st reported CD4/VLs indicate timely linkage to HIV care? Compared subgroups: – Median time to 1 st lab per the Registry – Proportion of 1 st labs in 0-7 days and 0-14 days Calculated sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV) of Registry data in correctly classifying patients’ true timely linkage to care status based on the 1 st CD/VL within: – 0-91 days (no labs excluded: National standard) – 8-91 days (excluded labs from 0-7 days) – 15-91 days (excluded labs from 0-14 days)

17. RESULTS

18. Figure 2: Linkage to care (n=782) Registry vs. MR Medical visit 80% (n=625) 1 st CD4/VL 100% (n=782) No Medical visit 20% (n=157)

19. No medical visit N=157 Medical visit N=625 P value Age at HIV diagnosis (median, range)42 (16-80)37 (15-78)0.001 Male Gender (%)69.474.20.220 Race/ethnicity (%) Black54.148.00.370 Hispanic36.937.4 White7.611.0 Transmission risk (%) Men who have sex with men18.542.9<0.001 Injection drug use8.94.2 Heterosexual33.829.3 No identified risk38.923.7 Concurrent AIDS diagnosis61.837.0<0.001 Table 1: Demographics/clinical outcomes

20. Figure 3: Inpatient diagnoses No medical visitMedical visit

21. Figure 4: Mortality outcomes: Deaths within 12 months of HIV diagnosis

22. Timely Linkage to Care

23. Figure 5: Timely linkage to care Registry vs. MR 97% 1 st CD4/VL (proxy measure): 0-91 days 75% True linkage event (HIV care visit): 0-91 days

24. Timely linkage Are labs within the early post-diagnostic period indicative of timely linkage to care?

25. Figure 6: Median time (days) to linkage based on 1 st CD4/VL, by subgroups 1 day (IQR 0-5 days) No medical visit Medical visit p <0.001

26. Figure 7: Proportion of 1 st labs in the early post-diagnostic period, by subgroups No medical visit No medical visit Medical visit Medical visit p <0.001 31% 19%

27. 99% 0-91 days8-91 days 15-91 days Figure 8: Performance of Registry data

28. Refinement of NYC’s timely linkage to care indicator

29. Figure 9: Final study population: Refining timely linkage to care Lag applied No lag applied

30. Figure 10: New York City’s refined Timely linkage to care indicator No lag Lag No lag Lag

31. Conclusions First population-based study to validate the use of HIV Surveillance’s proxy measure of timely linkage to care Substantial misclassification of timely linkage in the early post-diagnostic period NYC DOHMH implemented a refined definition of timely linkage to care (labs 8-91 days after diagnosis) – HIV labs in 1st 7 days  not indicative of linkage Surveillance data overestimated linkage for older persons, non-traditional HIV risk transmission, and those who died soon after diagnosis

32. Limitations Selection of provider – A portion had a CD4/VL at an alternate provider which may be the linkage to care visit –DID NOT validate if these patients EVER linked – Oversampled the acute care setting Selection of study population – Due to the complexities of HIV laboratory reporting, the 1 st lab may have been misclassified to the incorrect provider

33. Future directions Exploration of surveillance-based retention in care measures vs. medical abstraction data – All care visits at diagnosing provider during first 12 months immediately following diagnosis In depth exploration of mortality within 12 months of HIV diagnosis

34. cjain@health.nyc.gov Thank you!