Abstract
BACKGROUND: Long COVID (LC) is an infection-associated chronic condition (IACC) that tends to be neglected by healthcare systems. Studies of post-COVID healthcare utilisation find elevated levels of use but have mainly been conducted in high-income settings. In the context of Brazil's universal health system (SUS), our patient-engaged study aimed to map healthcare needs, use, and access barriers related to LC up to 24 months following COVID-19 hospitalisation, in the interest of informing health system planning for an equitable LC response. METHODS: A cohort survey included a probabilistic sample of hospitalised COVID-19-confirmed individuals aged ≥ 18, who had been discharged from public hospitals in Rio de Janeiro between December 2020 and November 2022. Socio-demographic and clinical data were collected, including self-reported LC symptoms, self-reported LC, healthcare needs, use, and access barriers. RESULTS: In a sample of 556 participants, corresponding to an estimated population of 11,328 individuals, 50.0% (95%CI 44.3-55.6%) reported healthcare needs in the six months prior, due to new-onset or worsened conditions after COVID-19. Almost 45.0% did not complete high school, while 26.5% lived below the poverty line (~ US$6.85 per day), indicating a high proportion of socially vulnerable individuals. High prevalence of LC symptoms, self-reported LC, and new diagnoses were observed. Healthcare needs were associated with acute disease severity, number of LC symptoms, and new post-COVID diagnoses, including cardiovascular and kidney diseases, and endocrine and musculoskeletal disorders. Significant gaps existed between need and access to services, and part of the access to services involved substantial out-of-pocket expenditure. These gaps were particularly pronounced for specialised medical services, scans/imaging, post-COVID rehabilitation services, and mental healthcare. Despite a universal health system, those with higher monthly incomes (above R$1,500 or ~ US$250) were more likely to have accessed specialised medical care. CONCLUSIONS: The SUS is not meeting the high need for LC healthcare, raising concerns about deepening health inequities. In Brazil, as elsewhere, LC joins other IACCs in becoming an invisibilised epidemic, with LC patients, especially those unable to pay for care, neglected amid general healthcare backlogs. A comprehensive pandemic response must include dedicated efforts to surveil and treat the long-term impacts of infection.