ArticleOrphanet journal of rare diseases2026
Levels and correlates of pandemic anxiety in people living with rare diseases: a cross-sectional analysis using a structural equation model.
Article in Orphanet journal of rare diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundWithin the context of the COVID-19 pandemic and beyond, pandemic anxiety (PA) is of high social and psychopathological relevance. Compared to the general population and people living with common diseases, people living with rare diseases suffer more from the effects of a pandemic in various areas. To date, there are almost no systematic studies on PA in this subpopulation. Therefore, the current study examines the levels and factors associated with PA, as well as the relationship of PA with clinical measures of anxiety and depression disorders in people living with a wide range of different rare diseases.
methodsData are drawn from an online survey conducted between March 2022 and February 2023 at the Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, on the care situation of people living with rare diseases during the COVID-19 pandemic. Analyses include descriptive statistics, Welch's t-tests, linear regressions, and a multivariate mediation model tested via structural equation modeling ([Formula: see text]).
resultsCompared to the general population, people living with rare diseases are more affected by PA during a pandemic. Female gender, age of 50 years and older, and living alone are risk factors for particularly high levels of PA. Furthermore, a previous COVID-19 infection is associated with lower PA; receiving vaccination correlates with higher PA. In addition to sociodemographic factors, health-related quality of life (HRQOL) and daily burden due to the rare disease are significantly associated with PA levels. Moreover, an increase in PA is associated with increased anxiety and depression scores in clinical screening questionnaires. Lastly, PA mediates the links of daily burden with anxiety and depression disorders.
conclusionsFindings highlight specific factors that should be addressed to effectively improve the situation of people living with rare diseases in the likely event of another pandemic. In addition, it becomes apparent that PA has negative implications for mental health that can persist beyond the context of a pandemic. Hence, PA should not be trivialized as a temporary pandemic state. More research is needed to compensate for the limitations of the present study and to better understand the structure of PA in people living with rare diseases.
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