Investigating care outcomes and experiences of adults with Long COVID through patient- reported indicators (PROMs and PREMs) in Belgium

Background: Long COVID, with its multisystemic manifestations, poses a substantial burden on health systems. Nevertheless, evidence regarding Long COVID patients’ perspectives, perceived health outcomes and care experiences in Belgium remains limited. Methods: OECD’s Patient-Reported Indicator Surveys (PaRIS) collected patient-reported outcome and experience measures (PROMS and PREMs) from individuals aged 45+ with chronic conditions. In Belgium, 4,687 primary care patients provided self-reported data between March 2023 and January 2024. This study explores the associated clinical and sociodemographic factors, care outcomes and experiences of adults with Long COVID in Belgium, by comparing respondents with and without Long COVID. Multivariate models were used to examine the clinical and sociodemographic determinants of Long COVID, and mixed-effects models were applied to compute the 10 key PROM and PREM indicators following the PaRIS10 methodology, accounting for the hierarchical structure of the data (patients nested within GP practices). Results: Overall, 50% (N=2,359) had a previous COVID-19 infection diagnosis, and over one in four (26%) of them reported Long COVID-related symptoms lasting 2 months or longer after COVID-19 infection (N=605, 12.9% overall prevalence). Higher risk of Long COVID was associated with being female, aged 45-54, lower educated, having multiple chronic conditions and higher BMI. Long COVID adults reported significant lower PROM scores for general health, wellbeing, physical and mental health compared to non-Long COVID respondents. Those with Long COVID symptoms lasting at least 1 year reported even poorer outcomes, particularly in general health, wellbeing and physical health. PREMs showed no significant differences between Long COVID and non-Long COVID respondents overall. However, trust in healthcare system and person-centred care was significant lower when Long COVID patients still had these long-term symptoms at survey time. Conclusions: In Belgium, adults with Long COVID report poorer health outcomes and less positive care experiences compared with those without Long COVID. These findings point to the substantial burden associated with Long COVID and to gaps in the current healthcare response to this emerging condition. Strengthening dedicated care pathways, improving coordination across services, and ensuring clear communication and support for patients will be essential to better address the needs of people living with Long COVID.