Abstract
BACKGROUND: This study comprehensively analyses healthcare access barriers and facilitators encountered by long COVID-19 patients in a universal healthcare system, including the potential role of central coordination units in alleviating the patient burden. STUDY DESIGN: Retrospective cross-sectional long COVID-19 patient questionnaire survey. METHODS: Data collection took place 10–12/2024 in Austria (n = 433). Conceptualized along the five steps of the ‘access to care’ framework, the questionnaire covered 47 barriers and 10 facilitators derived from a previous qualitative study. Descriptive statistics, Whitney-Mann-U and t-tests, as well as linear and ordered logistic regressions were used in the statistical analysis. RESULTS: Barriers were encountered in all access steps with the mean number of barriers considered problematic being 31.9 (SD 8.4) out of 47. The most common barriers were lacking information and the burden of self-organising one’s treatment (perceived as problematic by over 90%), followed by the need to consult private (non-contracted) doctors due to insufficient expertise in the public sector and difficulties in treating symptoms by GPs and specialists (85%). Participants living in federal states offering central coordination encountered statistically significantly fewer barriers, perceiving a mean of 17.4 barriers (SD 9.7) as very problematic compared to 21.0 (SD 9.2). Differences were particularly pronounced regarding the availability of services within the public sector and incurred costs although the overall burden remained high. Main facilitators included family and friends and the (information) exchange with other patients. CONCLUSIONS: Our findings have important policy and research implications beyond the Austrian context, supporting the establishment of central coordination units and research assessing the effectiveness and implementation of long COVID-19 pathways to improve patients’ healthcare access. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13690-025-01783-1.