1. Tracking Telehealth Needs for Individuals With Sickle Cell Disease Through the COVID-19 Pandemic: A Cross-Sectional Survey Study.
- Author
-
Treadwell, Marsha, Du, Lisa, Lawrence, Yemi, Gaspar, Maxine, Hassell, Kathryn, Shah, Sanjay, Akpan, Moses, Crook, Nicole, Taylor, Marcia, and Gopal, Srila
- Subjects
access to care ,quality of care ,sickle cell disease ,telehealth - Abstract
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 (p = 0.02). Few accessibility/technical issues were cited, however, caregivers reported more often having home support for telehealth (80.9% vs. 63.6%, p = 0.003). In multivariable analyses, participants seen in large centers (> 200) were more likely to give the highest satisfaction ratings compared with those in smaller centers (
- Published
- 2024