Trajectories of Depression and Anxiety in Adults with Rare Disorders across 13 Months During the COVID-19 Pandemic

Background Adults with rare disorders experience multiple psychosocial risk factors beyond their medical symptoms, including impaired quality of life, social isolation, loneliness, and mental health problems. These risk factors were amplified during the COVID-19 pandemic, when health care appointments and social/vocational activities were reduced or cancelled. Methods We conducted a monthly survey of 58 adults aged between 19 and 71 years ( M  = 45.1 years, SD  = 12.6) with rare disorders across 13 months during the COVID-19 pandemic. We measured symptoms of anxiety and depression with the Hopkins Symptom Checklist-5. Covid fear was measured with the Coronavirus Anxiety Scale. We examined the mental health and covid fear trajectories across the 13 months with multi-level growth curve models with repeated measures at Level 1 and individuals at Level 2. To account for differences in governmental restrictions throughout the 13 months, we used the stringency index from The Oxford Covid-19 Government Response Tracker. Results The growth models indicated stable levels of anxiety and depression over 13 months that were elevated compared to existing population data and were unpredicted by pandemic restrictions. The level of covid fear was significantly associated with the levels of anxious and depressive symptoms. Conclusions The current study found no improvement in mental health symptoms throughout the pandemic for persons with rare disorders. This highlights the necessity of investigating the long-lasting influence of the pandemic on mental health among individuals with rare disorders.