HIV/AIDS Epidemic

Social Work and the HIV Care Continuum: Assisting HIV Patients Diagnosed

in an Emergency Department Amy Edmonds, Eric Moore, Andre Valdez, and Cheri Tomlinson

Social workers have played an integral role in society’s response to the HIV/AIDS pandemic since the discovery of the disease. As the landscape of the epidemic has changed, so has the social work response to it. Social workers are, and have been, central to the success of TES- TAZ (Test, Educate, Support, and Treat Arizona), which is a nontargeted, routine opt-out HIV screening program in the emergency department (ED) of Maricopa Medical Center. This article focuses on the crucial role social workers play in every stage of program develop- ment, implementation, and patient movement through the stages of the HIV care continuum. Social worker involvement with HIV-positive patients diagnosed in the ED is imperative to achieving patient viral suppression.

KEY WORDS: emergency department; HIV/AIDS; HIV care continuum; linkage to care; social worker

Since the start of the HIV/AIDS pandemic, social workers have played an integral role in society’s response to the crisis ( Caputo, 1985). Over the past three decades, many aspects of HIV care and prevention and our approach to them have changed. One thing that has not changed, however, is the role social workers play in the care of people living with HIV/AIDS (PLWHA) and in HIV pre- vention programs. Social workers have long called for the integration of treatment and prevention pro- grams ( Freudenberg, 1994). Both the medical and social services establishments have come to under- stand that HIV treatment is HIV prevention. When effective antiretroviral (ARV) treatment is combined with more traditional prevention interventions, HIV transmissions can be reduced by more than 95 per- cent ( Cohen et al., 2013). For the first time since what we now know as AIDS was reported in 1981, we can discuss the control and even the end of the global pandemic ( Fauci & Marston, 2013), concepts that were unimaginable even five years ago.

BACKGROUND For more than two decades, routine HIV testing in hospital emergency departments (EDs) has been contemplated as a tool for diagnosing unrecog- nized HIV infection ( Kelen et al., 1988). In 2006, the Centers for Disease Control and Prevention (CDC)

issued revised recommendations for HIV testing in health care settings. These recommendations spe- cifically include hospital EDs as one setting in which routine, opt-out HIV screening should be consid- ered. One goal of the revised CDC recommenda- tions is to increase the number of HIV-infected people who are aware of their infection ( Branson et al., 2006). This awareness of diagnosis is the first step in the HIV care continuum.

The HIV care continuum, a set of sequential stages of HIV medical care and outcomes, provides a population-level snapshot of progress toward optimal health. The population level reviewed can range from a small set of patients, as in this article, up to a global scale. The stages of the HIV care continuum are as follows: diagnosis, linkage to med- ical care, retention in medical care, prescription of ARV medications, and viral suppression ( Gardner, McLees, Steiner, del Rio, & Burman, 2011; Horberg et al., 2010; Horberg et al., 2011). Definitions used for this analysis are included in Table 1. The ultimate goal of the HIV care continuum is for PLWHA to achieve viral suppression. Viral suppression reduces HIV-associated morbidity, prolongs the duration and quality of survival, restores and preserves immuno- logic function, maximally and durably suppresses plasma HIV viral load, and prevents HIV transmission ( U.S. Department of Health and Human Services,

238doi: 10.1093/sw/swv011 © 2015 National Association of Social Workers

Panel on Antiretroviral Guidelines for Adults and Adolescents, 2014). Viral suppression makes talk of control and the potential end of HIV possible.

In the summer of 2010, the Obama administra- tion released the first-ever National HIV/AIDS Strategy for the United States (NHAS) ( White House Office of National AIDS Policy [ONAP], 2010). Two main goals of the NHAS are to reduce new HIV infections and to increase access to care and improve health outcomes for PLWHA. Moti- vated, in part, by these changes to the HIV/AIDS landscape, in October 2010 Maricopa Medical Cen- ter (MMC) began planning for the implementation of nontargeted, routine, opt-out HIV screening in the adult ED. MMC, located in Phoenix, Arizona, is the anchor of the Maricopa Integrated Health System (MIHS), the only hospital-based safety-net health care system for the residents of Maricopa County. The adult ED has approximately 45,000 visits per year. The HIV testing procedure is a CDC-funded program known as Test, Educate, Support, and Treat Arizona (TESTAZ).

During TESTAZ planning, one main concern for ED physicians, social workers, and staff was to ensure that patients newly diagnosed with HIV were linked to outpatient medical care in a timely man- ner. In alignment with the NHAS, it is our expecta- tion that  newly diagnosed HIV patients will be linked to medical care within three months of diag- nosis. The NHAS aims to increase linkage to care nationally from 65 percent to 85 percent by 2015. The physicians and staff in the ED at MMC agreed that TESTAZ should strive to meet or exceed the NHAS goals to ensure that patients are appropriately

linked to medical care and support services. Fur- thermore, MIHS is committed to following newly diagnosed HIV patients from the ED through the HIV care continuum for the first year after diagnosis. This article focuses on the critical role social workers play in every stage of program development, imple- mentation, and patient movement through the stages of the HIV care continuum.

METHOD This observational study used data reports and chart reviews. TESTAZ was approved as exempt by the MIHS institutional review board. Data collection was mainly through reports extracted from the MIHS electronic medical record (EMR). Data were analyzed using Microsoft Excel (Microsoft Corpo- ration, Redmond, Washington). During the plan- ning stage, a social worker affiliated with MMC’s adult ED was hired to work as the program coordi- nator. By design, TESTAZ is a procedure of nontar- geted, routine, opt-out HIV screening for all patients of the adult ED between 18 and 64 years of age, if other labs are drawn, regardless of medical com- plaint. Unless the patient declines, consent for opt- out routine HIV screening is inferred and occurs after notifying the patient that the test will be per- formed unless the patient declines testing.

We implemented TESTAZ with few exclusion- ary criteria ( Geren et al., 2014). Exclusions include patients with a known HIV/AIDS diagnosis, who are intoxicated or otherwise unable to consent, who are in the custody of law enforcement, those requir- ing a level I trauma activation, and patients who report having been tested for HIV in the previous

Table 1: Continuum of HIV Care Category Definitions

Category Definition Comment

Diagnosed Confirmed HIV-positive patients aware of their HIV serostatus

Two of the 71 diagnosed patients were discharged prior to their preliminary results being returned. As a result, we have been unable to confirm their HIV serostatus.

Linked Diagnosed patients who attended a medical appointment with an HIV medical provider within 90 days of their diagnosis

Fifty-eight of the 71 diagnosed patients have been linked to medical care, with 50 of them in the 90-day time frame.

Retained Diagnosed patients linked to care, regardless of the time frame, who received a medical service between January 1, 2014, and June 30, 2014

Fifty-two of the 71 diagnosed patients meet the definition.

Prescribed Diagnosed patients prescribed antiretroviral medications

Fifty-four of the 71 diagnosed patients meet this definition.

Suppressed Diagnosed patients whose most recent HIV viral load was ≤200 copies/ml.

Forty-one of the 71 diagnosed patients meet the definition.

Edmonds, Moore, Valdez, and Tomlinson / Social Work and the HIV Care Continuum 239

12 months. Including HIV testing as a standard of medical care in the ED reduces the stigma surround- ing HIV testing. Routine, opt-out HIV screening also reduces the complexity of testing based on medi cal complaints or traditional behavioral assess- ments ( Branson et al., 2006).

EMR customizations were needed for the ED triage process to ensure the capture of required in- formed consent information. Consent for HIV test- ing is included with the general consent for medical care. As with other testing for reportable commu- nicable diseases in the ED, patients are informed of mandatory reporting requirements in writing through the general medical consent for treatment, the conditions of admission and treatment, the MIHS Notice of Privacy Practices, and the Patient and Visitor Information packet. Patients are allowed to ask questions and change their minds about HIV testing at any time during their ED visit. Patients older than 64 years may be tested if requested by the patient or if there is clinical suspicion of undiag- nosed HIV infection. Patients included in this analysis (N = 85) were individuals confirmed HIV positive in the MMC adult ED between July 11, 2011, and April 30, 2014. Patient medical records were analyzed for engagement at each stage of the HIV care continuum.

PROCEDURES During the TESTAZ planning phase, two main concerns expressed by staff were how to best deliver the preliminary diagnosis and how to best ensure that a newly diagnosed patient has access to HIV primary medical care and support services. At MIHS, ED-based social workers could be called on to help the patient take those crucial first linkage-to-care steps. The final decision was that, ultimately, the on-duty social worker would assist the physician with notification and initiate linkage to care due to each person’s established role in the ED. Until social workers could be trained with regard to TESTAZ, a different process was in place (as described in the next paragraph).

The procedure implemented at MMC in July 2011 indicated that when the laboratory identified a preliminary HIV-positive result, the program co- ordinator was contacted and asked to come to the ED to meet with the patient and the physician. The coordinator and the physician would meet with the patient, and the physician would inform the patient of the preliminary result. The physician and the

coordinator emphasized the need for additional laboratory work to confirm the result. During the ED visit, the coordinator provided support and con- firmed contact information for the patient to com- plete the necessary follow-up. Once the diagnosis was confirmed, the coordinator contacted the pa- tient to set up a meeting at the ED to inform the patient of the confirmatory result and start the link- age to medical care and support services processes. A patient navigator was later hired and trained by the coordinator to assist the newly diagnosed pa- tients from the ED. The patient navigator also works at the McDowell Healthcare Center (MHCC), the MIHS-operated HIV primary care clinic. The pa- tient navigator is available to assist with notifications when a social worker is not on duty or when ad- ditional help is requested.

A significant focus for EDs is to respond to the increasing health concerns and medical needs of underserved, underinsured, and marginalized pop- ulations. Social workers and patient navigators in an ED are well positioned to link patients to commu- nity resources, support services, and outpatient follow-up due to the characteristic function that an ED imbues as a liaison between hospitals and the populations served ( Madden, Carrick, & Manno, 2012). For this reason, MMC ED staff support the active involvement of the coordinator, patient nav- igator, and social workers as integral to the HIV testing process. Social workers employed in hospital EDs are well equipped to offer emotional support, crisis counseling, and appropriate referrals in these situations ( Silverman, LaPerriere, & Haukoos, 2009). Social workers refer patients to the patient navigator to facilitate engagement in care and retention in medical care and services.

The patient navigator continues to follow newly diagnosed HIV patients for one year post diagnosis to ensure linkage to and retention in medical care. During the follow-up period, the patient navigator assists the newly diagnosed patient to establish a habit of regular medical care and engagement with support services. In an effort to move patients along the HIV care continuum, the patient navigator also works with patients to encourage adherence to pre- scribed ARV medications.

After TESTAZ was established, a true routine, opt-out HIV testing environment required social work integration into the formal ED work flow for preliminary HIV-positive results. ED social workers are now involved with result notification, referral to

Social Work Volume 60, Number 3 July 2015240

the patient navigator, and provision of support dur- ing the ED visit. The MMC ED has established a system known as “5–30–5.” The system, developed by the adult ED medical director, is used when critical test results are returned to the patient. Al- though the system is not specific to HIV test results, we describe how 5–30–5 interacts with TESTAZ. Under the 5–30–5 system, the physician, accompa- nied by a social worker, delivers the preliminary HIV-positive result to the patient. The physician stays with the patient for about five minutes to an- swer questions and provide support. The physician then leaves the patient with the social worker for about 30 minutes. During this half-hour, while the physician attends to other patients, the social worker provides support to the patient and begins the link- age-to-care process by providing a one-page hand- out about what to expect. This handout does not mention HIV or AIDS, to preserve patient confi- dentiality and self-determination. Both the hand- out and the social worker inform the patient that the Maricopa County Department of Public Health (MCDPH) will be in contact for follow-up and partner services. Social workers explain the pro- cess of public health and partner notification in de- tail to the patient and encourage him or her to work with public health to identify partners who may need to be tested for HIV so they are aware of their status. At the end of the 30 minutes, the physician returns to the patient to see if additional questions have arisen and to check on the general well-being of the patient.

RESULTS MIHS was one of the evaluation sites for the new CDC HIV laboratory testing algorithm ( CDC, 2013, 2014). Our HIV testing procedure includes the collection of an HIV viral load blood sample to confirm a preliminary diagnosis. Data collected from the EMR allow us to monitor patient progress through the HIV care continuum. Additional de- mographic information is also collected. Table 2 includes selected demographic information from the confirmed HIV-positive patients, the general MMC adult ED population, patients who were tested, and those who actively opted out of HIV screening. Not included in the table are the patients who were not tested due to the exclusionary cri- teria discussed earlier. Opt-out testing in the ED has been crucial in identifying previously HIV unaware patients who may not have otherwise been

tested for HIV. Of the patients who were diagnosed with HIV in the ED, 45 (52.9 percent) had been tested for HIV in the past. Anecdotally, a main reason for patients not having been tested before is the self-perception that the patient was not at risk for HIV infection. This particular aspect of routine, opt-out HIV screening warrants further research. Another avenue for additional research is to explore how many of the 85 newly diagnosed HIV patients had sought care from other EDs prior to their visit at MMC.

Our results demonstrate the importance of a routine opt-out testing program to identify indi- viduals who may not seek out more traditional targeted testing venues because they do not believe they are at risk of contracting HIV. For example, Table 2 shows that 28.2 percent of the new HIV diagnoses in the ED report a heterosexual trans- mission risk. More traditional, targeted HIV test- ing programs have tended to concentrate less on this particular population ( Lyons et al., 2013). This is more than double the rate of the larger PLWHA populations in both Maricopa County and the state of Arizona. Through routine opt-out HIV testing, TESTAZ reduces stigma because it is of- fered to all patients who present to the ED regard- less of medical complaint. TESTAZ, as designed and implemented at MIHS, offers the additional benefit of assisting patients with linkage to medi- cal care and following patients for one year after diagnosis.

During the review period, the ED experienced an opt-out rate of 15.3 percent for HIV testing, which is lower than expected. The population with the highest opt-out rate (44.1 percent) self-identified as Hispanic or Latino. This ethnic group also repre- sents the highest proportion (48.2 percent) of the newly diagnosed patients. Although Hispanic/Latino patients represent the largest percentage of those who tested positive, it is interesting to note that the case-finding rate for this population is 120 per 100,000. Among black or African American newly diagnosed patients, the case finding rate is 233 per 100,000. In the state of Arizona, there are 207 His- panic/Latino PLWHA per 100,000 population and 739 black/African American PLWHA per 100,000 population. TESTAZ demonstrates that health dis- parities can be narrowed through routine opt-out HIV screening in an ED. For every Hispanic case identified per 100,000 in our ED, we identified 1.94 African American cases. However, statewide,

Edmonds, Moore, Valdez, and Tomlinson / Social Work and the HIV Care Continuum 241

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Social Work Volume 60, Number 3 July 2015242

for every Hispanic PLWHA per 100,000, there are 3.57 African American cases.

During the review period, there were 85 indi- viduals confirmed HIV positive. Fourteen of the 85 patients were removed from the HIV care contin- uum analysis for the following reasons: Five patients have relocated out of state, four are deceased, two are currently incarcerated, two were linked to care outside of the Maricopa Integrated Health System, and one was discharged directly to hospice care. Table 1 shows where each of the remaining 71 pa- tients is along the HIV care continuum. Fifty-eight of the 71 patients (81.7 percent) have been linked to medical care; 41 patients (57.7 percent) have achieved viral suppression.

On occasion, a patient is discharged from the ED before preliminary HIV-positive results are returned. In those instances, the patient is called or contacted by mail urging the return to the ED to receive criti- cal test results. Nine patients with a preliminary HIV- positive test have not responded to repeated contact attempts by both MIHS and public health staff. Rea- sons for not responding vary; the two most common reasons are that the patient is homeless or that the patient did not provide current contact information during ED registration. Partner Services at MCDPH has been unable to locate the lost to follow-up pa- tients to engage them in outpatient HIV medical care and support services. From record review and follow- up with Partner Services, there is suspicion that a few of the patients who have not responded may have known or suspected their HIV status and did not want to confront or acknowledge the diagnosis.

To address this linkage-to-care gap, the patient navigator and ED social workers have a list of the lost to follow-up patients. If these patients present to the ED again, the patient navigator, the social worker, or both will meet with them to initiate linkage to care. In addition, staff affiliated with other HIV prevention programs at MIHS receive a daily report of known PLWHA who present at our ED. If needed, program staff assist known HIV patients to re-engage in outpatient medical care. The pro- gram manager has been provided with a list of the TESTAZ lost to follow-up patients in the event they present to the ED. The program coordinator con- tinues to explore opportunities to enhance the pro- gram to ensure that patients are linked to care in a timely manner.

The case study that follows demonstrates the process of nontargeted, routine opt-out HIV

testing in the ED and the benefit of linking patients to medical care and support services in a timely manner to enable positive health outcomes. The case study illustrates the crucial role the social worker plays in helping patients move through the HIV care continuum, specifically for a new HIV patient diagnosed in the ED. The social worker is present when the patient is informed of the pre- liminary HIV-positive result in the ED; assists the patient to link to medical care and support services; encourages the patient to adhere to ARV medica- tions, with the goal of viral suppression; and pro- vides emotional support and referrals to social services agencies to facilitate the patient’s medical follow-up.

CASE STUDY In spring 2012, a pregnant woman who had not received prenatal care arrived at MMC complaining of abdominal pain. The patient did not opt out of HIV testing. An HIV test was completed, and the patient received a preliminary positive HIV result. The physician provided the notification of a pre- liminary positive HIV result with the assistance and support of both the coordinator and the patient navigator. The patient was visibly upset and con- cerned about her pregnancy and her two other children. The coordinator and patient navigator provided support and resources to the patient and assured her that they would contact her as soon as the confirmatory test was returned.

Two days later, the coordinator received a telephone call from the MMC laboratory that the patient’s viral load was greater than 10,000,000 copies/ml. The coordinator followed up with the patient navigator, who indicated that he would contact the patient. The patient was at risk of falling out of medical care due to substance use, unstable housing, and limited social support. The patient, who was enrolled in Medicaid, scheduled an appointment at MHCC. The patient was linked to medical care by attending her first appointment 30 days after diagnosis. The patient was prescribed ARV medications at her sec- ond appointment due to her pregnancy and high viral load. She followed up with her HIV and pre- natal medical appointments and took her ARV medication as prescribed. In fall 2012, the patient delivered a healthy baby. At the time of delivery, the patient’s viral load was less than 700 copies/ml. The patient has continued to follow up with all scheduled medical appointments, is adherent to

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her medication regimen, and has achieved viral suppression. To date, her baby has completed all follow-up appointments and has tested negative for HIV.

IMPLICATIONS FOR PRACTICE “Social workers help people cope with challenges in their lives. They help with a wide range of situ- ations, such as adopting a child or being diagnosed with a terminal illness” ( U.S. Department of Labor, Bureau of Labor Statistics, 2014). The HIV/AIDS epidemic was first documented in the United States in 1981. Social workers have helped people cope with an HIV diagnosis since the earliest days. As the landscape of the epidemic has changed, so has the social work response to it. Social workers have and continue to play an essential role in the success of TESTAZ. In keeping with the NHAS vision, social workers play a crucial role in facilitating unfettered patient access to “high-quality, life-extending care.” As illustrated by our case study, at every stage of the HIV care continuum, social worker involvement with HIV-positive patients is central to achieving viral suppression. To further illustrate our progress,

Figure 1 shows where our newly diagnosed patients are on the HIV care continuum. Figure 1 also in- cludes national benchmarks by way of comparison ( White House ONAP, 2013). TESTAZ exceeds the national average in diagnosing patients with HIV, linking patients to follow-up medical care, retaining patients in medical care, adherence to medications, and viral suppression. Having the social worker and the patient navigator involved with the patient from the initial HIV diagnosis in the ED and following the patient for at least one year after diagnosis has been paramount to the success of the TESTAZ pro- gram and patient health care outcomes.

MIHS is a public safety-net hospital, so it comes as no surprise that the majority (58.5 percent) of our ED patients are uninsured at the time of the encoun- ter. What was surprising to us is the 78.8 percent uninsured rate for our newly diagnosed patients. One of the steps that goes with linking patients to medical care is to help the newly diagnosed patient access programs that pay for HIV-related medical care. Social workers play a crucial role in helping patients navigate the application process for Medic- aid and the Ryan White HIV/AIDS Program.

Figure 1: Continuum of HIV Care Comparisons

Notes: National baseline data on patients prescribed antiretroviral medications could not be located. TESTAZ = Test, Educate, Support, and Treat Arizona.

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An unintended benefit of TESTAZ is that ED nursing and physician staff have become more vig- ilant when working with known HIV-positive pa- tients who are not in care. Physician and nursing staff have begun referring these patients to the social worker to assist with reestablishing HIV medical care and support services. The MMC ED staff have em- braced TESTAZ and recognized the benefit of having social workers involved in the process of informing patients of a new diagnosis and linking patients to outpatient HIV medical care.

To make HIV testing in the MMC adult ED routine under an opt-out scenario, it was crucial to train ED social work staff to assist with the de- livery of preliminary HIV-positive results, provide the patient with emotional support and referral to community resources, and facilitate the connection with the patient navigator to link the patient to medical care. MIHS has found that social workers and patient navigators are critical for the success of reaching optimal long-term outcomes (for ex- ample, follow-up with medical care and referrals to additional resources). This report shows that, with regard to nontargeted, opt-out HIV testing in an adult ED, the social worker and the patient navigator play an integral role as patients begin engagement along the HIV care continuum. The success of MIHS’s linkage to care has been attrib- uted to having the social worker and the patient navigator involved in the process from initial notification to linkage to and retention in HIV primary medical care to the ultimate goal of viral suppression.

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Amy Edmonds, LMSW, is TESTAZ program coordinator, and Eric Moore, BSW, is HIV program manager, Maricopa Integrated Health System, Grants and Research, Phoenix, AZ. Andre Valdez, PhD, is research scientist, Stanford Healthcare, Stanford, CA. Cheri Tomlinson, MPA, is vice president of grants and research, Maricopa Integrated Health System, Grants and Research, Phoenix, AZ. Address correspondence to Amy Edmonds, Maricopa Integrated Health System, Grants and Research, 2601 E. Roosevelt, Phoenix, AZ 85008; e-mail: [email protected].

Original manuscript received September 2, 2014 Final revision received January 20, 2015 Accepted February 10, 2015 Advance Access Publication April 28, 2015

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