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Retention in Care of Adults and Adolescents Living With HIV in 13 US Areas

Hall, H. Irene PhD, MPH*; Gray, Kristen Mahle MPH*; Tang, Tian MS; Li, Jianmin DPE*; Shouse, Luke MD, MPH*; Mermin, Jonathan MD, MPH*

JAIDS Journal of Acquired Immune Deficiency Syndromes: May 1st, 2012 - Volume 60 - Issue 1 - p 77–82
doi: 10.1097/QAI.0b013e318249fe90
Epidemiology and Prevention

Background: Monitoring immunologic and virologic responses to antiretroviral therapy in HIV-1–infected patients is an important component of treatment in the United States. However, little population-based information is available on whether HIV-infected persons receive the recommended tests or continuous care.

Methods: Using data from 13 areas reporting relevant HIV-related tests to national HIV surveillance, we determined retention in care in persons older than 12 years living with HIV at the end of 2009. We assessed retention in care, defined as ≥2 CD4 or viral load tests at least 3 months apart in the past year, by demographic, clinical, and risk characteristics and calculated prevalence ratios and 95% confidence intervals. We also assessed the percentage established in care within 12 months after HIV diagnosis in 2008 (≥2 tests, ≥3 months apart).

Results: Among 100,375 persons living with HIV, 45% had ≥2 tests at least 3 months apart. A higher percentage of whites were retained in care (50%) compared with blacks/African Americans (41%, prevalence ratio: 0.83, 95% confidence interval: 0.82 to 0.84) and Hispanics/Latinos (40%, prevalence ratio: 0.90, 95% CI: 0.87 to 0.92). Compared with heterosexual women (50%), fewer men who have sex with men (48%), heterosexual men (45%), and male (37%) and female (43%) injection drug users had ≥2 tests. Approximately 64% established care within 12 months of diagnosis.

Conclusions: Less than half of persons living with HIV had laboratory evidence of ongoing clinical care and only two thirds established care after diagnosis. Further assessments determining modifiable barriers to accessing care could assist with achieving public health targets.

*Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention, Atlanta, GA

ICF International, Atlanta, GA.

Correspondence to: H. Irene Hall, PhD, MPH, Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention, MS E-47, 1600 Clifton Road NE, Atlanta, GA 30333 (e-mail:

Supported by US Government work.

Presented at the 2011 National HIV Prevention Conference, August 16, 2011, Atlanta, GA.

The authors have no conflicts of interest to disclose.

Received August 13, 2011

Accepted December 20, 2011

Providing ongoing care and antiretroviral therapy prolongs survival among people with HIV and is an important component of a comprehensive strategy to address HIV in the United States. HIV-infected people who miss care visits are at increased risk for premature mortality,1,2 including those who fail to engage in regular care soon after the initial HIV diagnosis.3 Failure to engage or remain in care is a marker for later initiation of antiretroviral therapy and worse treatment adherence,2,4 reduced treatment benefits, less viral suppression, and increased secondary transmission,5–10 all essential components of a successful approach to reduce HIV incidence.11 Further, missed visits are missed opportunities for additional activities for HIV prevention through health care, including screening and counseling for risk behaviors.12

A previous estimate from a meta-analysis suggests that 54% of persons with diagnosed HIV infection in the United States had at least 2 HIV care visits within a year.13 Blacks are less likely to adhere to care appointments and more likely to experience virologic failure compared with whites, and HIV-infected persons who are younger, engage in substance abuse, or have higher CD4 results have fewer care visits.4,14,15 Determining care patterns and assuring regular care among those who may have challenges with accessing care and those with high transmission potential due to high prevalence or risk behaviors is particularly important.

The DHHS Panel on Antiretroviral Guidelines for Adults and Adolescents recommends regular monitoring of disease status and treatment response in HIV-1–infected patients with CD4 and viral load (VL) test results every 3–4 months.16 Among those with stable viral suppression, CD4 may be monitored less frequently (every 6–12 months). However, little population-based information is available on whether HIV-infected persons receive the recommended frequency of tests. In addition, there are few population-based estimates of the size of the HIV-infected population eligible for treatment or engaged in care after HIV diagnosis.15,17 National HIV surveillance data can be used to monitor HIV care visits by examining CD4 and VL data for HIV-infected persons. We used data from the National HIV Surveillance System to determine the percentage of people living with HIV (PLWH) who received care as measured by CD4 and VL tests overall and by demographic and risk characteristics. We also assessed the percentage of persons established in care after HIV diagnosis.

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HIV infection is reportable in all 50 states, the District of Columbia, and 6 United States–dependent areas. All cases are reported from state and local health departments to the Centers for Disease Control and Prevention (CDC) without identifying information. Assessments and elimination of duplicate reports occur both on the state and national levels. However, not all areas have mandatory reporting of all HIV-related laboratory tests, including all values of CD4 cell counts and VL tests.18 Using data from 13 jurisdictions [Delaware, District of Columbia, Iowa, Indiana, Kentucky, Missouri, Nebraska, New York State (excluding New York City), North Dakota, San Francisco, South Carolina, West Virginia, and Wyoming] with mandatory laboratory reporting of HIV-related tests and reporting of all tests to national HIV surveillance, we determined retention in care in persons older than 12 years who were diagnosed with HIV through the end of 2008, residents of the 13 areas at the time of diagnosis, and PLWH at the end of 2009. Data were reported to CDC through December 2010.

Jurisdictions that have laws and/or regulations and implemented laboratory reporting routinely monitor completeness of reporting. Private and public laboratories must report all HIV-related laboratory tests to the respective health departments. Health departments monitor reporting and follow-up when gaps in reporting are identified. Federal institutions are not required to report; however, these institutions often do report, and tests ordered by federal institutions using private laboratories are reported to the health departments.

The DHHS Panel on Antiretroviral Guidelines for Adults and Adolescents provides benchmarks for monitoring HIV disease by CD4 and VL tests every 3–4 months, and CD4 monitoring every 6–12 months among patients who are clinically stable.16 To determine retention in care, we first determined the number and percentage of PLWH who had at least one CD4 or VL test result in the past year (ie, in 2009). We also determined the number and percentage of persons with HIV in the areas who had more than one care visit (based on the CD4 and VL test results) and whether such care visits were at least 3 months apart, which is the definition used by the Health Resources and Services Administration as a clinic performance measure and an indicator of care in the National HIV/AIDS Strategy.19,20

We assessed the number and percentage of the PLWH retained in care by sex, race/ethnicity (black/African American, Hispanic/Latino, white, and multiple/other race), age (13–24, 25–44, 45–64, and ≥65 years), transmission category [male-to-male sexual contact (MSM), injection drug use (IDU), male-to-male sexual contact and IDU, heterosexual contact, and other], country of birth (United States vs. foreign-born), and stage of disease as at the end of 2008 [ever diagnosed with stage 3 (AIDS) vs. not].21 We compared groups with χ2 statistics and calculated prevalence ratios and 95% confidence intervals. We assessed whether evidence of relocation since diagnosis, as available in the surveillance system, affected our results. Multiple test results in the same month were counted as one care visit.

We further determined the percentage of PLWH with viral suppression and whether viral suppression was sustained throughout 2008 and 2009 among those diagnosed by the end of 2007 and alive at the end of 2009. We defined viral suppression as VL ≤400 copies per milliliter, based on the detection limit of some available tests. Previous work has indicated very low transmission rate among couples with HIV-infected partners at VL <400 copies per milliliter.5,22 Cases with a quantitative VL result ≤400 copies per milliliter or an undetectable VL with a missing quantitative result for the VL were classified as virally suppressed (VL ≤400 copies/mL). Persons with all VLs ≤400 in 2008 and 2009 were considered to have sustained viral suppression. In addition, we determined the proportion of PLWH with CD4 counts above 350 cells per cubic millimeter or 24%.

Finally, we determined the number and percentage of persons newly diagnosed in 2008 who were established in care and the percentage of persons whose VL was suppressed within 12 months of diagnosis. Established in care was defined as having had at least 2 CD4 or VL test results within 12 months of diagnosis that were at least 3 months apart. Any newly diagnosed persons who were reported to have died within 12 months of diagnosis were excluded from these analyses (n = 233, 4.3%).

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In the United States, a total of 100,375 people were diagnosed with HIV through 2008 in 13 areas and living with HIV at the end of 2009 (Table 1). Of these, 58,772 (58.6%) had at least one care visit (ie, ≥1 CD4 or VL test) in 2009, and 44,920 (44.8%) had at least 2 care visits at least 3 months apart. The percentage of PLWH who were in care in the past year (at least 1 visit) differed by demographic and risk groups (all P < 0.05, except MSM and IDU), with lower percentages of blacks/African Americans (54.9%) and Hispanics/Latinos (49.3%) having been in care in the past year compared with whites (64.2%). The percentage in care was slightly lower among older PLWH (eg, 50.9% among those 65 years and older) compared with PLWH aged 13–24 years (62.1%). More females exposed through heterosexual contact were in care compared with the other risk groups among females or males, and more PLWH who had ever been diagnosed with stage 3 (AIDS), US-born persons, and those diagnosed more recently had care visits compared with those not diagnosed with stage 3, foreign-born persons, or those diagnosed in earlier years. These patterns were generally also observed for having 2 or more care visits, except the percentage that had 2 or more care visits among those aged 13–24 years was closer to that of the older age groups. Results were similar when excluding cases that had evidence in the surveillance system of relocating between jurisdictions (data not shown).



Of 48,074 PLWH who had at least one care visit each year in 2008 and 2009, 42,989 (89.4%) had at least one VL test each year. The most recent VL was suppressed among 73.2% of those in care. VL was suppressed among 76.9% of those with at least one VL test each year (Table 2); 53.0% had sustained viral suppression during the 2 years, and 66.3% had sustained VL results ≤5000 copies per milliliter. For 58.0% of those in care, the most recent CD4 count was >350 cells per cubic millimeter. Among those with CD4 test results in each year, 62.7% had a most recent CD4 count of >350 cells per cubic millimeter, and 40.4% had CD4 counts that were all >350 cells per cubic millimeter in the 2 years.



Among persons diagnosed with HIV in 2008 in the 13 jurisdictions, 63.6% had 2 or more care visits at least 3 months apart within 12 months of diagnosis (Table 3). The percentage of blacks/African Americans (54.3%) and Hispanics/Latinos (69.4%) established in care was lower than that of whites (74.7%) (all Ps < 0.05). The percentage established in care was also lower among younger (13–24 years) and older persons (65 years and older) diagnosed with HIV compared with those aged 25–64 years. More females exposed through heterosexual contact were established in care compared with other risk groups among females or males. There were no differences between US- and foreign-born persons.



Among the 5136 persons diagnosed in 2008 and alive within 12 months of diagnosis, 80.2% had a VL measurement within 12 months of diagnosis. Overall, 41.6% had a suppressed VL within 12 months of diagnosis. Among those with a VL result within 12 months of diagnosis, the mean number of months from diagnosis to viral suppression (first VL≤400copies/mL) was 4.8 months (data not shown).

Finally, we determined retention and established care for particular populations—youth and black/African American, Hispanic/Latino, and white MSM. For those aged 13–17 years, 54.4% had ≥2 tests at least 3 months apart in 2009 among 480 PLWH in that age group, which was higher than the 44.8% retained in care overall; but results were similar for being established in care after diagnosis in 2009 (among 74 new diagnoses, 62.2% were established in care among 13- to 17-year-olds vs. 64% overall). Lower percentages of black/African American MSM were in continuous care (41.4%) or established in care after HIV diagnosis (54.5%) compared with Hispanic/Latino (48.4% and 70.6%, respectively) and white MSM (50.7% and 74.8%, respectively).

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A large percentage of persons with HIV in 13 areas of the United States were not receiving ongoing care as measured by CD4 and VL tests. Only 58.6% had 1 care visit and 44.8% had 2 care visits at least 3 months apart, and a large percentage of persons diagnosed with HIV did not get established in care in the first year after diagnosis, with only 63.6% having had 2 or more care visits at least 3 months apart. Care utilization was substantially lower among blacks/African Americans and Hispanics/Latinos compared with whites and among injection drug users and heterosexual males compared with heterosexual females. These findings from National HIV Surveillance data are similar to earlier findings of disparities in health care utilization for HIV from specific jurisdictions.3,4,15,23

The National HIV/AIDS Strategy20 recommends that HIV-related tests be available to all PLWH to assist with disease monitoring and treatment efficacy. Our analysis showed considerable variation in monitoring between groups. Similar to a previous report from South Carolina, women had higher care utilization than men,17 although no such difference was reported for New York City.15 MSM also had relatively high care utilization compared with other risk groups; however, 52% of MSM with HIV were not receiving regular care, and fewer black/African American MSM received regular care compared with other MSM. MSM are the only risk group with increases in HIV incidence in recent years,24 suggesting that efforts to improve retention and treatment efficacy among MSM would be particularly important not only for improved care and survival but also for prevention. The National Strategy also sets a benchmark for increasing access to care and improving health outcomes for PLWH for Ryan White HIV/AIDS Program clients. The goal is to increase the proportion of clients who are in continuous care (at least 2 visits for routine HIV medical care in 12 months, at least 3 months apart) from 73% to 80%. Our analyses suggest that, overall, the baseline of care for PLWH is below that for Ryan White Program clients, requiring substantial effort to reach the benchmark of 80%.

Although mental health or substance abuse problems among PLWH may indicate greater need for health services, these factors may also contribute to missed care visits, as do stigma and some social determinants of health, such as lack of health insurance, lower education, poverty, unemployment, homelessness, and lack of transportation.25,26 Effective interventions for linkage and retention in care must address these barriers to accessing care. In addition, Aberg et al12 point to the patient–provider relationship as an important determinant of care utilization, including effective communication, time to address individual needs, prompt scheduling of appointments, and support through case managers. However, although some promising approaches using outreach to improve retention in care have been implemented,27,28 little evidence exists on proven interventions for retention in care.

Assessing care visits or testing to monitor HIV disease is an important process measure for quality care in light of findings of better adherence to treatment with regular care.2 In addition, quality care should be reflected in outcome measures, such as viral suppression.29 With surveillance data, we are unable to assess the proposed outcome measure of maximal viral control if prescribed ART30 as information on treatment is not available. Instead, we measured viral suppression among those with continuous care. Viral suppression was high (>70%) among those in care when measuring the most recent VL; however, only about half had consistent viral suppression throughout the 2-year period, which may, to some extent, reflect natural variation in VL. Decreases in new diagnoses have been observed with similar percentages of persons with viral suppression in defined populations.31,32 However, the potential impact of treatment and viral suppression on local HIV transmission is not fully realized with more than 40% of persons with HIV not in care and presumably unsuppressed viremia. In addition, an estimated 20% of persons with HIV have not been diagnosed with HIV,33 accounting for high transmission potential due to their presumed unsuppressed viremia and higher risk behavior compared with those aware of their infection.34

A higher percentage of PLWH who had stage 3 (AIDS) disease at any time before the year of observation had care visits compared with those not classified as late stage disease. However, more than 40% of PLWH with stage 3 disease did not have any care visits. Foreign-born persons were established in care with similar frequency as US-born PLWH; however, fewer were retained in care. From surveillance data, we are unable to ascertain whether foreign-born persons return to their country of origin when they become sick and are therefore lost to follow-up. In general, foreign-born persons may have additional challenges with accessing care due to language barriers or health care coverage.

Our analysis was subject to several limitations. Data were available from a limited number of areas, covering 12% of all PLWH in the United States. Because additional areas improve laboratory reporting to CDC, future estimates of care utilization will be more representative. The analyses included PLWH in the areas based on residence at diagnosis. Although removing persons with evidence of relocation did not change results, surveillance may not always capture information on relocation. In addition, delays in death reporting may affect results based on PLWH. No information was available on care visits that did not result in laboratory test (CD4 or VL) or that were ordered in other jurisdictions by providers not reporting laboratory data, and information on treatment and insurance status is not complete in surveillance data. Information was also not available to determine whether CD4 or VL tests were ordered by emergency departments or inpatient settings, and PLWH may have CD4 or VL tests performed but fail to attend the outpatient visit. However, surveillance data provide information on care measures that are not subject to limitations of patient recall or appointment tracking2 and measures can be consistently applied to all locations.

In summary, we found that a large proportion of people with HIV are not in continuous care and such care is lower among blacks/African Americans, Hispanics, and specific-risk groups, such as injection drug users compared with their counterparts. Assuring PLWH receive HIV care benefits the individual and can reduce transmission risk by reducing infectiousness among those with suppressed viremia and by reducing behavioral risk through prevention services in the health care setting, including risk screening, counseling, and condom distribution.35,36 Implementation of effective linkage and care retention interventions is needed to raise the percentage of PLWH in continuous HIV care.

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HIV; standard of care; health care disparities

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