Study Offers Insights into the Psychosocial Effects of Global Pandemics on the Rare Disease Community

Rare Daily Staff

While there have been a few studies that explored the healthcare impacts of the COVID-19 pandemic on the rare disease community, they have focused largely on the problem of access to healthcare. Now, a new qualitative study explores the psychosocial impact of the pandemic makes some troubling findings, but also sees potential benefits.

The study led by Kathleen Bogart, associate professor of Psychology and Director of the Disability and Social Interaction Lab at Oregon State University, and published in the Orphanet Journal of Rare Diseases, examined responses from people with rare diseases to open-ended questions during the first wave of the COVID-19 pandemic in the United States in the spring and summer of 2020. A total of 759 people with 231 unique rare diseases participated in the study.

As with earlier studies, the researchers found participants experienced problems with access to healthcare and the quality of care. They also noted people experienced an exacerbation of symptoms, psychological distress, and a lack of social support and reliable information.

But participants also noted benefits, which included expanded telehealth, which enhanced their ability to access medical and mental health providers and rare disease specialists. The researchers said many participants expressed hope that by highlighting social and health inequities faced by people with rare diseases and other minorities, the pandemic would prompt greater understanding and policies that could improve the quality of life for people with rare diseases.

During the pandemic, most participants derived their support from family and friends while other support methods that participants had previously relied on were disrupted. The researchers noted that people with sufficient support often did not experience the same stress, uncertainty, feelings of isolation, and inability to complete daily tasks as those who lacked support.

While most of the responses to researchers’ questions concerned negative experiences, they did find positive psychosocial experiences as well as hope for long-term changes. Some people benefitted from work from home policies and were able to manage their conditions more effectively. There was also hope expressed about changes to public health measures in general and that the experience would result in greater empathy across society.

Participants said they wanted society to be more accepting and accommodating of the needs of people with rare diseases and they hoped for better policies to address the unique challenges the community faces. They also expressed hope that the pandemic would lead to policies that would address health inequities experienced by people with rare diseases and other minorities.