Most countries implemented interventions to eliminate the spread of the SARS-Cov-2 virus. These measures often included physical distancing policies, economic lockdowns, and a rapid shift to virtual life (1). These restrictions changed the structure of everyday life for all individuals, and created a set of unique challenges for people with rare disorders (2). Rare disorders are disorders that affect less than 1:2000 individuals (3). More than 7000 rare disorders have been identified globally, and even though each separate disorder is rare, up to about 6-8% of the population suffer from at least one rare disorder (4). Rare disorders are often chronic and require sustained contact with health care providers throughout the entire lifespan (4). This results in a high burden on subjective wellbeing as well as a strain on healthcare services.
Rare disorders show high symptom heterogeneity, however people with rare disorders often share common risk factors which have been tied to increased risks for anxiety and depression (5,6). These include risk factors related to the somatic aspects of the diagnosis, but also challenges related to structural barriers in society (7,8). Somatic risk factors include multi-morbidity, and frequent and complex somatic issues (6,7), while structural risk factors include difficulties in navigating health care services, lack of information about the diagnosis, experiences of prejudice, and economic challenges (5). Both somatic and structural risk factors have been found to increase the risk of symptoms of anxiety and depression (6).
Previous research has indicated that individuals with rare disorders often have worries related to their own physical health, which could lead to more anxiety tied to infection from the SARS-Cov-2 virus. They have lower levels of trust in the healthcare system, as their primary care providers may have limited knowledge of their condition, and they may feel unsupported in navigating their diagnosis (9).
Additionally, rare disorders are frequently diagnosed years after the onset of symptoms, which may make persons with rare disorders feel insecure about the health system(9). In sum, the challenges in trusting the healthcare professionals and the periods of diagnostic uncertainty can lead to more fear and worry about health in persons with rare disorders.
Risk Factors and the Pandemic
Several risk factors were intensified for people with rare disorders during the pandemic, which might have increased symptoms of mental distress. Several studies have found correlational and prospective evidence for the number of stressful life events and heightened levels of stress to increase risk of developing mental health problems in people with rare disorders (10). During the pandemic: health care appointments were cancelled, vocational activities were reduced, many lost their jobs, many received conflicting advice about the severity of an infection, and social interaction were limited (3,11,12).
In a cross-sectional study we found evidence of a heightened level of mental distress in individuals with rare disorders compared to norms (13). The initial study found that fear related to getting infected by the SARS-Cov-2 virus to be a significant risk factor for symptoms of anxiety and depression, indicating that stressful life events could increase mental health symptoms (13). The cross-sectional nature of our initial study made it difficult to determine whether increased levels of anxiety and depression were a temporary reaction to the public health crisis, and if their mental health would improve or deteriorate over time.
In the general population, (14,15)found fluctuations in symptoms of anxiety and depression throughout the differing stages of the pandemic, with more severe symptoms during periods of more restrictions and higher spread of the virus. Shevlin et al. (2021) found significant heterogeneity in trajectories throughout the pandemic in the general population. Some individuals exhibited stable low or stable high levels of anxiety and depressive symptoms, whereas subgroups were identified that displayed either initially high and thereafter declining symptoms or initially low and thereafter increasing symptoms. Findings based on general population samples may not be generalizable to individuals with rare disorders, therefore it is important to understand how people with rare disorders fared throughout the pandemic to inform post-pandemic services and prepare services for returning pandemics.
Research Questions and Hypotheses
We address two research questions in the current study. 1) How did the trajectories of mental health symptoms in people with rare disorders evolve throughout 13 months of the pandemic?; and 2) How did covid fear influence mental health problems in people with rare disorders over this 13-month interval of the pandemic? Based on our earlier findings (13), we expected levels of anxiety and depressive symptoms to covary with differing stages of the pandemic and that higher fear of covid would be associated with more mental health symptoms over time.