Interventions to enhance linkage and retention in HIV care services

In 2011, Gardner et al. highlighted significant gaps across the HIV care continuum resulting in merely a quarter of people living with HIV (PLWH) in the United States successfully achieving sustained viral suppression (E. M. Gardner, McLees, Steiner, Del Rio, & Burman, 2011). Important strides have been made over the past 10 years with the CDC recently reporting that 53% of PLWH were virally suppressed (CDC, 2019). However, linkage and retention to HIV care remain a common and significant issue. Of the 86% of PLWH who have been diagnosed, only 64% were linked to HIV care and 49% retained in care (Calcaterra, Glanz, & Binswanger, 2013). Mortality risk is 71% higher among patients with one or more missed visits in their first year of HIV care (Horberg et al., 2013). Further, retention in treatment for patients on antiretroviral therapy is independently predictive of survival (Giordano, Hartman, Gifford, Backus, & Morgan, 2009; Mugavero et al., 2009; Tripathi, Youmans, Gibson, & Duffus, 2011; Zhang et al., 2012).

Insufficient linkage, retention and engagement in HIV care in the United States is a product of multi-level barriers. Patient-level barriers notably include HIV-related stigma (Bogart et al., 2008; Lunze et al., 2017), depression (Mayston, Kinyanda, Chishinga, Prince, & Patel, 2012; Simbayi et al., 2007) and substance use (Ge, Sanchez, Nolan, Liu, & Savage, 2018; Vagenas et al., 2015), gender specific issues (Lazo et al., 2007; Sherer et al., 2002; Turner, Laine, Cosler, & Hauck, 2003), transportation vulnerability (Goswami et al., 2016), housing insecurity, and negative beliefs about getting HIV care (Rumptz et al., 2007). Organizational and systems-level barriers include funding and staffing limitations, appointment structure and long wait times (Horstmann, Brown, Islam, Buck, & Agins, 2010; Mugavero et al., 2007), negative patient-provider relationship (Schneider, Kaplan, Greenfield, Li, & Wilson, 2004), insurance and funding policies ("HIV Screening and Access to Care: Exploring the Impact of Policies on Access to and Provision of HIV Care," 2011), among others. Evidence-based strategies that target multi-level barriers are needed to improve the continuum of care, particularly for vulnerable PLWH.

Interventions targeting linkage and retention variables have primarily focused on patient navigation services and behavioral therapy. Higa and colleagues (2016) identified best practices for HIV care linkage, retention and re-engagement. This systematic review identified 10 best practices, 50% were considered evidence-based interventions while the remaining were evidence-informed. The patient-level evidence-based interventions included patient navigation with therapy sessions focused on skills building. Three of the evidence-informed interventions also focused on peer navigation or case management, supplemented with motivational interviewing and skills building or linkage to community resources. The other patient-level intervention focused on a bilingual, multicultural team to provide tailored services and materials. All of the patient-level interventions identified included patient navigation services. Some peer navigation services have focused directly on assisting the patient through HIV care while other studies have focused on navigating community resources (L. I. Gardner et al., 2005). Encouraging patients to keep their medical visits through increased in-person contact or telephone contact, and developing a plan to address patients’ unmet needs as demonstrated improvements on retention outcomes (L. I. Gardner et al., 2014).

Systems-level interventions aim to reduce structural barriers, and enhance clinic infrastructure and environment to support linkage, retention and engagement in HIV care. These interventions focus on improving the system of care through its delivery of care models and agency operations. To date, knowledge on evidence-based systems-level interventions within HIV care is quite limited. Liau and colleagues (2013) conducted a systematic review of interventions to improve linkage and engagement in HIV care, noting the absence of evidence-based systems-level interventions in the United States.

Bauermeister and colleagues (2009) highlighted strategies of systems-level interventions: (1) technical assistance (e.g., staff training, program planning expert consultation, external support in program evaluation); (2) infrastructure development (e.g., fundraising, shifting agency’s mission/goals, restructuring clinic leadership); and (3) developing new or strengthening existing external partnerships. HIV linkage and retention interventions have primarily focused on implementing peer navigators or case managers into existing clinic infrastructure to coordinate care and attend appointments. Retention strategies using patient navigators (Keller et al., 2017; Wohl et al., 2011), reminder phone calls or text messaging (Perron et al., 2010), and using an interactive notification system to alert providers when patients missed appointments (Robbins et al., 2012) have shown promise.

Additionally, co-locating services has proven to be an effective approach for improving HIV care and retention, particularly when co-locating HIV services with non-HIV specific primary care and tuberculosis (Mizuno, Higa, Leighton, Mullins, & Crepaz, 2019). Lucas (2010) provided buprenorphine treatment in HIV primary care clinic along with offering counseling sessions to PLWH and their results demonstrated a significant increase in HIV care retention. Co-location of HIV care with serious mental health appeared to reduce structural barriers and improve satisfaction among patients (Sullivan et al., 2006). Although co-locating services is effective, costs, space needs, and training and licensing requirements often impede widespread implementation. Claborn and colleagues developed a clinician-facing digital platform that aims to overcome these barriers and serve as a virtual co-location of services (Claborn, Becker, Ramsey, Rich, & Friedmann, 2017). Primary outcomes include linkage and retention in HIV/PrEP care. This trial is currently underway.

One qualitative study recently reported on systems-level intervention strategies implemented across 12 health departments (Neumann et al., 2018). This was a qualitative evaluation of the funding recipients’ progress reports over a three-year period. Sites varied by approaches and objective effectiveness evaluation metrics were unavailable. Strategies included: integrating data systems for HIV surveillance, reorganizing staff to improve efficiencies, developing policies and protocols for linkage and retention, building external collaborations to improve coordination, and staff training. Importantly, Neumann and colleagues note barriers to implementing system-level change. Linkage barriers included delays in hiring and contract execution, funding availability, external partners’ capacity to provide services; and reorganization of health department units. Retention barriers included delays in hiring, training, infrastructure building, billing and reporting, data integration and management; balancing time devoted to coordination and implementation; and legal issues related to data sharing.