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 (< 100, aOR: 2.33; 95% CI: 1.21, 4.48, p = 0.01); however, those who needed help from a telehealth navigator were less likely to give the highest telehealth experience rating versus those who did not need help (aOR: 0.37; 95% CI: 0.19, 0.71, p = 0.003).

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.