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

Bogart, Kathleen R.; Hartinger, Annelise; Klaus, Maggie; Jenkinson, Elizabeth

Abstract

Background: Before 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. Results: During 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. Conclusions: Limitations 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.

• Journal Article Type: Article
• Acceptance Date: Jan 19, 2024
• Online Publication Date: Jan 30, 2024
• Publication Date: Jan 30, 2024
• Deposit Date: Jan 31, 2024
• Publicly Available Date: Feb 1, 2024
• Journal: Orphanet Journal of Rare Diseases
• Electronic ISSN: 1750-1172
• Publisher: BioMed Central
• Peer Reviewed: Peer Reviewed
• Volume: 19
• Issue: 1
• Article Number: 33
• DOI: https://doi.org/10.1186/s13023-024-03033-z
• Keywords: Rare disease, Rare disorder, Coping, Healthcare access, Social support, COVID-19
• Public URL: https://uwe-repository.worktribe.com/output/11642507
• Additional Information: Received: 14 March 2023; Accepted: 19 January 2024; First Online: 30 January 2024; : ; : This study was approved by the Oregon State University Institutional Review Board.; : Not applicable.; : The authors declare that they have no competing interests.