A qualitative study to identify thematic areas for HIV related patient-reported outcome measures (PROM) and patient-reported experience measures (PREM)

Abstract

Abstract Background The use of patient-reported outcome measures (PROM) and patient-reported experience measures (PREM) provide health providers with valuable feedback on how to improve clinical care and patient outcomes. This paper describes a qualitative study that was conducted to learn about factors influencing the well-being of people living with HIV (PLHIV) in Finland. The findings will be used to develop themes for HIV-specific PROM and PREM questions. Methods PROMs and PREMs were developed by the Finnish Institute for Health (THL) as a part of a project to develop a national quality-of-care registry for HIV. The study aimed to identify issues and concerns among people living with HIV (PLHIV) that influence their well-being (PROMs) and their experiences in the healthcare system (PREMs). The data were collected through face-to-face in-depth interviews and focus group discussions based on open-ended and semi-structured questions. The data were analyzed using thematic analysis. Results The assessment identified the following PROMs of concern: psychological well-being, concerns about stigma, physical health, social well-being, sexual well-being, medication uptake, managing other medications with antiretrovirals (ARVs), and growing old. The assessment identified the following PREMs: helping patients understand their own health status, proving an opportunity for patients to discuss physical health, psychological and sexual well-being, supporting the uptake of ARVs, assisting patients with medication use, showing compassion towards patients, and empowering patients against stigma. Conclusion These findings of the study can be used to develop domain-specific PROM and PREM questions for the national HIV quality care register.

Keywords

• HIV
• Patient-centered care
• PROM
• PREM