Integrating patient-reported outcomes and lived experiences into evolving models of HIV care From implementation to long-term outcomes

People living with HIV who initiate treatment in a timely manner can achieve life expectancies comparable to those without HIV. As a result, health-related quality of life (HRQoL) has emerged as a key clinical outcome referred to as the “4th 95” in UNAIDS’ continuum of care. Alongside a growing emphasis on patient-centred care, this creates opportunities to rethink HIV care delivery. At Amsterdam UMC, we introduced patient-reported outcome measures (PROMs) into routine care and found that 13% of people with HIV reported clinically relevant symptoms of posttraumatic stress disorder. We also assessed longitudinal changes in stigma-related disclosure concerns and self-stigma among ageing people with HIV. Despite numerous biomedical advancements we observed no improvements in stigma. We also assessed HRQoL and found that there were no clinically relevant differences between people with HIV and a comparable group without HIV. We did find that clinically relevant depressive symptoms were more prevalent in people with HIV. We explored nurses’ perceptions of their role in HIV care, identifying tensions between normalising HIV as a chronic condition and maintaining its exceptional status. Regarding peer support, nurses stressed the importance of delineated roles and of better linkages. In studying patient preferences for new long-acting regimens on the horizon, we identified differences between patients’ preferences compared to providers’ willingness to recommend them, suggesting the need for greater alignment. In the General Discussion, I consider how resource constraints might drive change, and suggest that PROMs can help support integrated, patient-centred care, and differentiate service models.