+review

Literature Review on Retention in HIV Care

Introduction Ideally, HIV-infected persons would progress from learning their HIV status to immediate linkage to and full engagement in high quality HIV care. Successful HIV treatment, in fact, requires sustained engagement in HIV care.1, 2 However, the reality is quite different. Studies have found that approximately 50 percent of known HIV-infected individuals are not engaged in regular HIV care 3, 4 and approximately one-third of HIV-infected individuals fail to access care for three consecutive years.5 As a result, these individuals do not have sustained access to antiretroviral therapy (ART), prophylactic medications, or other medical services. Research on retention reveals that lack of private insurance, distance from the clinic, and having to wait for an appointment have been associated with “noshows.” Studies show that patients retained in care are more likely to have better health outcomes including improved CD4 count, suppressed viral load, and fewer hospital admissions/emergency room visits.6 Continuous retention in care has benefits similar to those of timely entry, and a number of strategies have been developed to promote retention such as intensive case management, patient navigation, peer support groups, access to social services, flexible clinic and appointment hours, and mobile outreach to find clients who were lost to follow-up.7, 8 The National HIV/AIDS Strategy calls for establishment of “a seamless system to immediately link people to continuous and coordinated quality care when they are diagnosed with HIV” and emphasizes removing barriers that impede patient access to HIV primary care.9 Despite the data available on the importance of retention in care, its linkage to health outcomes, and recent public health attention on the issue, more needs to be done to understand retention issues. Because of the increased need to promote and support development of interventions that bring people in—or back—to care and keep them engaged, the Health Resources and Services Administration HIV/AIDS Bureau selected retention as the topic of a national quality improvement initiative across all Ryan White HIV/AIDS Program funding streams. The in+care Campaign focuses on retention and aligns with the National HIV/AIDS Strategy goals. This literature review outlines the strategies found to be effective and highlights the health outcomes congruent with being retained in HIV care.

What Is Retention? Engaging and retaining patients in HIV care and treatment is an ongoing, dynamic process. Patient retention in care assesses the ability of a provider or care system to maintain a continuous relationship with a patient. It can be measured in different ways and over different intervals. For example, researchers assess the time from diagnosis to entry into care, or count the number of medical appointments kept or missed within a specified interval. Retention data are collected from patients and providers, medical records, project reports, interviews, chart reviews, and computer-assisted selfreporting. The HRSA HIV/AIDS Bureau conducted an expert consultation meeting in 2005 focusing on outreach efforts to engage HIV-infected persons in care. This meeting produced an Engagement in Care Continuum Model10, 11 intended to assist service providers and policymakers design programs to meet variable client needs (see Figure 1: Engagement in Care Continuum). Research has shown that clients may move through different stages along the continuum at various times in their lives. Figure 1 Engagement in Care Continuum

Not in Care Unaware of HIV Status (never tested or never received results) Know HIV Status (not referred to care or didn’t keep referral) May Be Receiving Other Medical Care But Not HIV Care Entered HIV Primary Medical Care but Dropped Out (lost to follow-up) In and Out of HIV Care or Infrequent User Fully Engaged in HIV Primary Medical Care (linked to care)

FULLY ENGAGED Source: Cheever L. Engaging HIV-infected patients in care: their lives depend on it. Clin Infect Dis. 2007;44:1500-2.

HIV Care in the United States: A Snapshot of Retention in Care Retention in HIV care is an independent predictor of survival; mortality rates are significantly lower among patients seen 3 or 4 times per year versus once or twice annually.12, 13 In one study, attending all medical appointments during the first year of HIV care doubled survival rates for years afterwards, regardless of baseline CD4 cell count or use of antiretroviral therapy (ART).14 Population-based studies in the United States, however, have found that a proportion of people living with HIV/AIDS fail to receive care in any year; in fact, several cohort studies show that in some settings, 22 to 44 percent of patients are entirely lost to follow-up.15, 16, 17 Marks and colleagues analyzed data from more than 53,000 people diagnosed with HIV between 1995 and 2009. A total of 69 percent entered care, most within 4 to 6 months. Retention rates waned over time, underscoring the importance of efforts to keep people in care (see Table 1: Retention in HIV Care).18 According to a study by Gardner and colleagues, of the more than 1 million people living with HIV/AIDS in the United States, an estimated • • • •

1 in 5 do not know their HIV status 2 in 5 have not seen an HIV primary care doctor 3 in 5 don’t regularly see their doctor, and 4 in 5 are not viral load suppressed. 19

TABLE 1 Retention in HIV Care

Follow-up Interval and Number of Visits Retention Rate Total

59% (N = 75,655)

6 months (≥2 visits)

69% (N = 7,046)

12 months (≥2 visits)

54% (N =17,875)

12 months (≥3visits)

59% (N = 32,192)

18 to 24 months

61% (N = 2,199)

3 to 5 years (visits in consecutive years)

26% (N = 16,343)

Source: Marks G, Gardner LI, Craw J, et al. Entry and retention in medical care among HIV-diagnosed persons: a meta-analysis. AIDS. 2010;24:2665-78.

The first step into care, however, is HIV testing. In the United States, at least 20 percent of HIV-infected people are unaware of their status, and more than 30 percent already have AIDS by the time they are diagnosed with HIV.20, 21 In 2007, the median CD4 cell count at entry into HIV care was 317 cells/mm3, which is below the threshold (350-500 cells/mm3) at which ART initiation is currently recommended.22, 23 Research has also found that racial and ethnic minorities and White women are most likely not to keep initial appointments.24 Lack of appropriate care translates to fewer people receiving ART, preventative care, and other medical services.25 Evidence indicates that access to care and receipt of ART, however, can decrease HIV transmission. A recent study among people living with HIV/AIDS with undetectable virus found transmission of the virus may not spread as readily to others. In fact, the data are compelling that effective ART reduces sexual transmission. In one meta-analysis looking at 11 cohorts of serodiscordant heterosexual couples in which the people living with HIV/AIDS were treated with ART and had