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

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.

Important Gaps in HIV Knowledge, Attitudes and Practices Among Young Asylum Seekers in Comparison to the General Population.

Migrants are disproportionately affected by HIV in many European countries, including Finland. We aimed to compare the HIV-related knowledge, attitudes and practices (KAP) of young asylum seekers to those of the general young adult population. Two cross-sectional surveys were conducted among 20- to 25-year-old young adults: The TIE study among asylum seekers (n = 47) and the World AIDS Day 2014 study among the general population (n = 485). Important gaps in HIV KAP were identified especially among the young asylum seekers. For the general young adult population, previous HIV testing was associated with female gender, better HIV knowledge and increased sexual activity. Health education concerning HIV needs to be further enforced among young adults in Finland. Due to poorer HIV knowledge, young asylum seekers might be especially vulnerable to HIV. The asylum process is a window of opportunity for health education and HIV testing.