Factors Associated With Depression and Anxiety in People With Rare Diseases During COVID-19: A Cross-Sectional Study

Background: People living with a rare disease are a vulnerable patient group and experience challenges in participation and healthcare. Due to changes in healthcare and threat of the infection during coronavirus disease 2019 (COVID-19) pandemic, people living with rare diseases have been particularly affected. Therefore, this study aimed to investigate depressive symptoms and symptoms of anxiety during the COVID-19 pandemic and identify factors associated with symptom levels. Methods: One-hundred and seventy-two people living with a rare disease were recruited from centers for rare diseases and patient organizations in Germany from January 2021 to January 2022. In addition to descriptive analyses and group comparisons, we applied multiple linear regression models to identify factors associated with outcome variables of interest (depressive and anxiety symptoms, assessed by the Hospital Anxiety and Depression Scale [HADS]). Results: For the depressive symptoms, 14% of the participants reached the cutoff for moderate and 14.5% for a high level of depressive symptoms. Concerning anxiety symptoms, 22% reported moderate levels of anxiety and 13.4% reported high levels of anxiety. Higher depressive symptoms were significantly associated with older age, lower socioeconomic status, having severe or varying symptoms compared to low symptom severity, lower treatment satisfaction, lower social support, and more unmet needs. Higher anxiety levels were associated with more unmet needs and more intense COVID-19-related concerns. Conclusions: The findings indicate red flags of high symptoms that should be considered during routine care of patients with rare diseases. Healthcare providers should be sensitized for the need for psychosocial support and use a quick assessment to assign patients in need to specific support programs. Trial Registration: German Clinical Trials Registry: DRKS00020488.