ENOrphanet Journal of Rare Diseases | A Cross-Sectional Analysis of Pandemic Anxiety Levels and Their Correlates in People with Rare Diseases
Date: January 30, 2026
Classification: Frontiers
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This study systematically assessed the mental health status of individuals with rare diseases during the pandemic, revealing significant factors associated with pandemic anxiety and its mediating role in anxiety and depression, providing crucial evidence for future public health interventions.
Literature Overview
The article titled 'Levels and correlates of pandemic anxiety in people living with rare diseases: a cross-sectional analysis using a structural equation model,' published in the Orphanet Journal of Rare Diseases, reviews and summarizes the levels of pandemic anxiety and its correlates among individuals with rare diseases during the COVID-19 pandemic. Using structural equation modeling, the study analyzes the relationships between pandemic anxiety (PA), health-related quality of life (HRQOL), daily burden, and clinical symptoms of anxiety and depression. The results indicate that pandemic anxiety levels in rare disease patients are significantly higher than in the general population and are closely associated with various sociodemographic and disease-related factors. Furthermore, pandemic anxiety mediates the relationship between daily burden and symptoms of anxiety and depression. The study emphasizes the need to pay special attention to the mental health needs of rare disease patients during future public health crises. This research provides empirical support for developing targeted psychological support strategies.Background Knowledge
Rare diseases are a group of disorders affecting a very small proportion of the population. Globally, there are approximately 6,000 known rare diseases, affecting about 4% to 6% of the population. These conditions often have complex pathophysiological mechanisms and are mostly chronic, incurable genetic disorders. Due to the complexity and heterogeneity of rare diseases, patients frequently face delayed diagnosis, limited treatment options, and insufficient social support. During pandemics, rare disease patients face not only a higher risk of infection but may also be unable to access necessary treatments due to strained healthcare resources. Additionally, social isolation and economic stress further exacerbate their psychological burden. Although existing studies have shown significant increases in anxiety and depression levels in the general population during the pandemic, research focusing on rare disease patients remains relatively scarce. In particular, pandemic anxiety, as a psychological response to a specific situation, has not been well understood in terms of its manifestation and underlying mechanisms in rare disease patients. Therefore, this study aims to fill this gap by systematically evaluating pandemic anxiety levels and their correlates in rare disease patients, providing scientific evidence for future public health policies and psychological interventions.
Research Methods and Experiment
Data were collected from an online survey conducted between March 2022 and February 2023 at the Department of Medical Psychology, University Medical Center Hamburg-Eppendorf. Participants included individuals with various rare diseases, including self-reported diagnosed patients and their caregivers. The study employed a cross-sectional mixed-methods design, focusing on quantitative data analysis. Participants were recruited through the network of the German Chronic Rare Disease Alliance (ACHSE) and rare disease centers. Inclusion criteria required self-reported diagnosis of a rare disease. The survey included standardized scales and newly developed items covering current mental health status and concerns related to COVID-19. Key measurement tools included the Pandemic Anxiety Scale (PAS) and Fear of COVID-19 Scale (FCV-19S) to assess pandemic anxiety; the Short Form Health Survey (SF-8) to evaluate health-related quality of life; and self-developed items to assess daily burden, access to medical resources, and symptoms of anxiety and depression. Data analysis used descriptive statistics, Welch’s t-test, linear regression, and structural equation modeling (SEM).Key Conclusions and Findings
Research Implications and Outlook
This study is the first to systematically assess pandemic anxiety levels and their correlates in rare disease patients during a pandemic, highlighting the importance of pandemic anxiety in this population. The findings suggest that pandemic anxiety is not only a psychological response in the general population but also a significant component of mental health in rare disease patients. Women, older adults, and individuals living alone are at higher risk for pandemic anxiety and require special attention. Moreover, the mediating role of pandemic anxiety between daily burden and symptoms of anxiety and depression suggests that psychological support should comprehensively consider patients’ daily life stressors. Future research should further explore the long-term impacts of pandemic anxiety and how psychological interventions can mitigate its negative effects. Additionally, the findings provide important references for public health policymakers, recommending special attention to the mental health needs of rare disease patients and the provision of targeted psychological support and services during future public health crises.
Conclusion
Using a cross-sectional analysis, this study systematically evaluated pandemic anxiety levels and their correlates in rare disease patients during the pandemic. The results show that pandemic anxiety levels in rare disease patients are significantly higher than in the general population and are closely associated with various sociodemographic and disease-related factors. Higher pandemic anxiety levels were reported by women, individuals aged 50 years and older, those living alone, and unvaccinated individuals. Additionally, health-related quality of life (HRQOL) and daily burden were significantly associated with pandemic anxiety levels, whereas access to medical resources showed no significant association. Pandemic anxiety significantly predicted symptoms of anxiety and depression and mediated the relationship between daily burden and these symptoms. The structural equation model indicated that pandemic anxiety explained 66% of the variance in anxiety symptoms and 80% of the variance in depressive symptoms. These findings emphasize the need to pay special attention to the mental health needs of rare disease patients during future public health crises and to provide targeted psychological support and services. The study provides empirical evidence for developing effective psychological intervention strategies, contributing to improved quality of life for rare disease patients.
