Understanding the preferences of patients with HIV in care coordination programs, and revising programs based on those preferences, leads to better outcomes.

“Effective interventions have been identified for accelerating progress on the HIV care continuum, but there is scant evidence regarding such interventions in real-world service settings, especially in populations with complex barriers to medication adherence and viral suppression,” Madellena Conte, MS, and colleagues explain. “Moreover, there are many ways to deliver effective interventions. By understanding the preferences of the individuals who deliver the interventions as well as those we hope to reach with these interventions, we can potentially improve uptake and engagement and optimize health outcomes.”

Well-known barriers to treatment adherence, and therefore viral suppression, include substance use and mental health issues, poverty, food insecurity, and unstable housing, according to the researchers. A growing body of research shows that combination interventions, with evidence-based social, behavioral, and biomedical strategies, improve outcomes among those impacted by these barriers.

However, limited research has examined the preferences of these at-risk populations and the clinicians and non-medical providers “on the front lines” of HIV care, Conte and colleagues tell PW.

In 2009, New York City launched the HIV Care Coordination Program (CCP), a multifaceted medical case management intervention designed to support people with HIV at risk for experiencing poor HIV-related outcomes. According to the investigators, those at highest risk for such outcomes in New York City include transgender individuals, Black and Latino people, people who are homeless, and those with a history of injection drug use, and these disparities are pervasive in other HIV epicenters across the United States as well. In 2017-2018, the CCP was revised and reimplemented based on lessons learned from the early years of the program.

Conte and colleagues conducted the Program Refinements to Optimize Model Impact and Scalability based on Evidence (PROMISE) study to evaluate the impact and implementation of the revised program model versus the original CCP. PW spoke with Conte, Rebecca Zimba, MHS, PhD-candidate, and Denis Nash, PhD, MPH to learn more about their findings, which were published in the Journal of the International AIDS Society.

PW: What findings from your study are important to emphasize?

Rebecca Zimba, MHS, PhD-candidate: While there is evidence that high-intensity, high-touch services like home visits and directly observed therapy are effective for supporting persons with HIV who have struggled with adherence, they may exceed the needs or the comfort zone of some clients.

Using a discrete choice experiment with four categories of CCP attributes, we found that the most important attributes, for clients, were help with adherence to ART and the location of where program visits take place.

However, we also found that different groups of participants were influenced to a greater or lesser degree by these features. It is important to recognize that, often, there is no “one size fits all” way to deliver supportive services, and to explore the feasibility of offering services via multiple modalities. The 2018 revisions to the CCP have already enabled more flexibility in the provision of differentiated care so that agencies can be responsive to clients’ needs, and our results confirm the value of that flexibility.

PW: How can your findings be extrapolated to similar programs in the US?

Madellena Conte, MS, MD-candidate: Clinicians and other service providers can incorporate our findings by seeking to understand the individual preferences of the patients they serve and tailor the design and delivery of HIV services accordingly. For example, our study revealed a strong preference for telehealth among participants overall, and supports the investment in remote service delivery options in the New York City CCP.

Denis Nash, PhD, MPH: The original HIV CCP has been selected by the CDC and HRSA as a national best practice and evidence-based intervention. As such, this study is important for efforts to identify and disseminate the strongest HIV CCP model for replication, translation, and scale-up in other parts of the country.

With this selection by the CDC and HRSA, we feel a clear responsibility to share how this program has evolved and may continue to evolve in response to our research and evaluation findings. That said, we recognize that our Ryan White Part A Care Coordination programs may not be representative of US HIV medical case management programs more broadly, and results from our patient discrete choice experiment would likely be most relevant to other Ryan White service populations in other major urban jurisdictions with mature HIV epidemics.

PW: What additional research is needed in this area?

Rebecca Zimba, MHS, PhD-candidate: Our prior research demonstrates that intensive medical case management programs like the CCP can significantly improve HIV outcomes. However, there is still much room for improvement in terms of sustaining HIV viral suppression. While it is vital to evaluate the effectiveness of existing interventions and modes of service delivery, it is equally important to anticipate as much as possible the best ways to introduce new options in HIV care, such as long-acting injectable (LAI) ART.

Recently, we assessed the preferences of clients and service providers in care coordination for LAI ART using a discrete choice experiment. We are now piloting a decision aid, as well as a set of LAI ART educational materials, to empower clients in CCPs to make informed choices about the treatment they receive. There remains an urgent need to ensure that biomedical innovations reach the patients who could derive the most benefit—meaning those who have been least well-served by prior/conventional treatment options. Without implementation science approaches to optimize access, uptake, and maintenance of newer tools, major advances like LAI ART could even exacerbate health disparities, by primarily reaching the segments of the patient population that already experience the best care and outcomes.

It is always important for providers to integrate evidence-based practices with a client/patient-centered approach to supportive care delivery, and perhaps a silver lining of the COVID-19 pandemic is that there is more comfort with the telehealth versions of care coordination services. It remains to be seen how much they continue to be used and how these services impact adherence and viral load suppression.