"Moving Fourth": Introduction of a practical toolkit for shared decision-making to facilitate healthy living beyond HIV viral suppression

Abstract

An extension of the UNAIDS 90-90-90 target proposes >90% of people living with HIV (PLHIV) should have good health-related quality of life (HrQoL); however, limited guidance exists. The "Health Goals for Me" framework, an individualized approach to HIV care, provides a framework to assess HrQoL. We analyzed several patient-reported outcome measures (PROMs) to develop a practical toolkit to facilitate shared physician-patient decision-making. HrQoL subdomains, actionable in the clinical setting and measurable as PROMs, were selected. PROMs were collated through systematic literature searches, scored by the authors on usability, validation, and availability, after which practical recommendations were made. Nine subdomains were selected across physical, psychological, social, and environmental domains; 46 validated PROMs were identified. After pre-screening, from 39 evaluated PROMs, we recommended PROMs in the following subdomains: fatigue/energy loss, frailty/resilience, sleep disturbance, substance use, anxiety/depression, cognition, sexual function and desire, and stigma. Using this toolkit, healthcare professionals and PLHIV can collaborate and mutually agree on individual care objectives. Following the "Health Goals for Me" framework, appropriate care interventions can be implemented and reviewed in a continuous cycle. We discussed how eHealth interventions, which will have increasing importance in the post-COVID era, can facilitate improved HrQoL for PLHIV by utilizing toolkits such as the one described here. Implementation of this practical framework and the PROMs toolkit could provide a useful approach to assessing HrQoL in PLHIV and could enhance the physician's ability to gain valuable insights into the patient's daily life across a broad range of HrQoL issues.

Keywords: HIV infection; Patient-reported outcome measure; Healthy living with HIV; Health-related quality of life.