Brief Report: It's Time to Embed Health-Related Quality of Life Across all Steps of the HIV Care Cascade

Abstract

Background: Calls for stakeholders across the global HIV landscape to widely and systematically adopt person-centered care and patient-oriented research approaches have been made by HIV scholars, clinicians, patients, and groups such as the Joint United Nations Programme on HIV/AIDS (UNAIDS). Such calls implicitly acknowledge that the end goal of HIV care, research, and advocacy goes beyond HIV viral suppression or undetectability toward ensuring optimal health-related quality of life (HrQoL) for people living with HIV (PLWH). Indeed, global efforts have focused on keeping people alive yet have failed to ensure that they feel alive.

Approach: In this brief report, we highlight the progress that has been made toward evolving the HIV care cascade to better represent actual experiences of PLWH, especially those that are most vulnerable and marginalized. We then describe what person-centered care, patient-oriented research, and HrQoL are and why they are important for our current context in HIV. We conclude by sharing 2 propositions for the global HIV community to consider moving forward.

Conclusions: HIV care must not only focus on viral suppression but also better recognize the intersecting and multifaceted challenges faced by PLWH when taking HIV treatment and engaging in care. Evaluating HrQoL at each step of the cascade using validated patient-reported outcome and experience measures would assist in systematically tracking and addressing challenges faced by PLWH. Measures chosen through global consensus may facilitate rigorous comparisons across jurisdictions. Adopting a patient-oriented research paradigm will also be crucial for empowering and meaningfully engaging patients throughout the research process.