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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.

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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

  • Sarah Braunstein
  • Rebekkah Robbins
  • Colin Shepard
  • HIV Epidemiology and Field Services Program

National HIV/AIDS Strategy

  • NHAS (July, 2010) - first comprehensive roadmap
  • Amore coordinated response to the HIV epidemic
  • Primary Goals for 2015:
    • Reduce infections
    • Increase access to care
    • Reduce health disparities

HIV Continuum of Care

Das, MoupaliPrevention of HIV Acquisition: Behavioral, Biomedical, and Other Interventions.

Medscape 2012

monitoring hiv care cd4 vl
Monitoring HIV Care – CD4/VL
    • HIV Care = outpatient HIV visit with provider authorized to prescribe ART1
  • Clinical monitoring/treatment guidelines2
    • Traditionally, 1st 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 allCD4 and VLs3[New York2005]
  • Limited comprehensive evaluation of the validity of surveillance data as proxy of HIV care

1Health Resources and Services Administration. The HIV/AIDS Program: HAB Performance Measures Group 1. In; 2009. 2DHHS Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents. In; 2012. 3 CSTE Position statement 04-ID-07

measuring linkage to care
Measuring linkage to care
  • Surveillance traditionally measures linkage by a single event: 1streported CD4/VL on/after HIV diagnosis date
  • Accuracy of 1st CD4/VL1,2 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: routinemedical 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. Local3 and national measure

1 BertolliA. et al The Open AIDS Journal 2012,6:131-141. 2Keller et al. J Acquir Immune DeficSyndr2013.

3New York City HIV/AIDS Surveillance Slide Sets.

new york city s care validation study
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 1st CD4/VL on/after HIV diagnosis and linkage HIV care


Validate 1st lab test (CD4/VL) from the diagnosing facility as measure of timely linkage toHIV care

  • Hypothesis: early post-diagnostic lab tests within first 2 weeks arepart of diagnostic work-up and not an actual linkage event



study population selection new york city hiv registry
Study population selection: New York City HIV Registry
  • 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

Figure 1: Final study population

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 1st CD4/VL reported

from co-located site within 12 months of diagnosis eligible for medical record (MR) abstractions

165 (17%) excluded: MR unavailable

782 (83%) patients

Registry (1st CD/VL) and MR (care visit) data

a nalytic population n 782
Analytic population (n=782)

Linkage within 12 months, per Registry



HIV care visit confirmed by MR

No medical visit group

Medical visit group

  • 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
timely linkage to hiv care
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)
do 1 st reported cd4 vls indicate timely linkage to hiv care
Do 1st reported CD4/VLs indicate timely linkage to HIV care?
  • Compared subgroups:
    • Median time to 1st lab per the Registry
    • Proportion of 1st 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 1st 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)
figure 2 linkage to care n 782 registry vs mr
Figure 2: Linkage to care (n=782)Registry vs. MR

No Medical visit

20% (n=157)

1st CD4/VL

100% (n=782)

Medical visit

80% (n=625)

figure 3 inpatient diagnoses
Figure 3: Inpatient diagnoses

No medical visit

Medical visit

figure 5 timely linkage to care registry vs mr
Figure 5: Timely linkage to careRegistry vs. MR


1st CD4/VL

(proxy measure):

0-91 days


True linkage event

(HIV care visit):

0-91 days

timely linkage

Are labs within the early

post-diagnostic period indicative of timely linkage to care?

Timely linkage

figure 6 median time days to linkage based on 1 st cd4 vl by subgroups
Figure 6: Median time (days) to linkage based on 1st CD4/VL, by subgroups

No medical


1 day (IQR 0-5 days)

p <0.001

Medical visit

figure 7 proportion of 1 st labs in the early post diagnostic period by subgroups
Figure 7: Proportion of 1st labs in the early post-diagnostic period, by subgroups

p <0.001

p <0.001














Figure 8: Performance of Registry data


0-91 days

8-91 days

15-91 days

  • 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
  • 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 1st lab may have been misclassified to the incorrect provider
future directions
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