The Rare Covid Experience: Systemic and Health Factors, Coping, and Support Among Adults With Rare Diseases During Covid-19

Objective: There are currently 6,000-7,000 recognized rare disorders, affecting approximately 1 in 10 Americans. While each rare disease is unique, the experience of having a rare condition is relatively common. It is this common experience of having a rare disease during the Covid-19 pandemic that we aim to represent with this present study. Method: We used an inductive qualitative analysis technique to analyze the responses of 9 open-ended questions from our 759 participants, representing 231 unique rare diseases. Results: At the end of our analysis, we grouped responses into 20 codes, which were further consolidated into 3 themes: systemic and health factors, coping, and support. One of the most common experiences of the rare disease community during Covid-19, according to our study, is reduced access to healthcare. Our results also show a clear link between support and coping; those who have the necessary support could cope better during the pandemic, and vice versa. Finally, many participants hoped that Covid-19 would highlight inequalities, especially among the rare disease community, both in intangible ways such as greater understanding, and more tangible ways such as policies aimed to improve the quality of life of the rare disease community.Keywords: rare disease, Covid-19, healthcare, support, copin

A shock to the (health) system: Experiences of adults with rare disorders during the first COVID-19 wave

BackgroundBefore COVID-19, people with rare diseases (RD) experienced numerous disparities in quality of life and healthcare access and quality, yet little is known about the experiences of this underserved group during the pandemic.ResultsDuring the first wave of the COVID-19 pandemic in the United States, spring and summer of 2020, 759 participants representing 231 unique RDs responded to open-ended questions about the impact of the pandemic on life with a RD, healthcare access, and coping. Qualitative conventional content analysis was used to analyze responses. Identified themes represented positive and negative dimensions of change, including a shock to the (health) system, coping with uncertainty, and the value of social support while isolated.ConclusionsLimitations in healthcare access and quality were the most frequently described as impacts of COVID-19. Other major negative impacts included exacerbation of symptoms, psychological distress, and a lack of usual social support and reliable information. However, participants also noted silver linings, especially in healthcare. For some, expanded telehealth enhanced their ability to access medical and mental health providers and RD specialists. Finally, many participants hoped that, by highlighting social and health inequities faced by people with RDs and other minorities, the pandemic would prompt greater understanding and policies that could improve the quality of life of the RD community