Tracking Telehealth Needs for Individuals With Sickle Cell Disease Through the COVID-19 Pandemic: A Cross-Sectional Survey Study.

Background and Aim: Pervasive disparities characterize sickle cell disease (SCD) care, including limited access to SCD specialists. Rapid deployment of remote healthcare provision and support during the COVID-19 pandemic provides an opportunity to understand telehealth barriers/facilitators for SCD. We aimed to evaluate telehealth experiences and satisfaction for routine visits among adults and caregivers of children with SCD within a US regional collaborative. Methods: 151 adults ≥ 18 [median (IQR) = 36 (28, 43) years], and 94 caregivers [median child age (IQR) = 12 (7, 14) years] completed a 30-item online survey in 2021 assessing systems issues such as reliable Internet; health information sharing; and consumer focus (e.g., visit started on time). A multivariable logistic regression model was used to evaluate relations between independent variables and the outcome overall satisfaction with telehealth. Results: Patients were primarily diagnosed with sickle cell anemia (60.8%) and prescribed hydroxyurea (57.6%). Satisfaction with telehealth was high (> 90%), but 60.6% of caregivers gave the highest rating compared with 44.9% of adults ( Conclusion: Views of telehealth were favorable, although caregivers reported greater satisfaction and resources compared with adults with SCD. It remains important to identify factors related to telehealth utilization and efficacy for SCD populations in varied geographies and settings, to ensure equity in access.