Study Background

This study aims to identify the changes in the lives of patients with Sickle Cell Disease (SCD) during the COVID-19 pandemic, including stress, anxiety, and pain. SCD is a chronic disease that causes red blood cells to become abnormally shaped, leading to various complications, and patients are at high risk of respiratory infections. It is anticipated that the pandemic, with its limited access to healthcare, will increase the mental and physical burden on patients.

Design and Participants

The study, which began on June 15, 2020, is an online survey conducted on adult SCD patients residing in the United States. The survey includes questions about medical history, mental and physical health, demographic information, stress resilience, healthcare utilization, and awareness of COVID-19. Participants are asked to complete the survey within approximately 40 minutes and can choose to participate in follow-up surveys every 6-9 months.

Expected Outcomes

This study can quantify the specific impact of the pandemic on SCD patients, thereby providing insights for improving healthcare services. In particular, the study investigates medical mistrust and willingness to participate in research, which can be used to develop patient recruitment strategies for future clinical trials. The data will be anonymized and shared with other researchers, promoting collaboration across the academic community.

Data Utilization Prospects

The collected data can be used for in-depth analysis of mental health, pain management, and healthcare utilization patterns. This will enable policymakers to design support programs for vulnerable patient populations during pandemics, and healthcare institutions to explore alternative service delivery methods, such as telemedicine. In the long term, it has the potential to contribute to the development of personalized treatments to improve the quality of life for SCD patients.