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Updated: Aug 20, 2025

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Accessible Care with High Patient Satisfaction: Telemedicine Use in Sickle Cell Disease
Shu Zhang1, Wingel Xue1, Eric Pickering Boorman2
1Division of Hematology, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Abstract:
The COVID-19 pandemic necessitated a rapid transition to telemedicine, providing a critical opportunity to study telemedicine satisfaction and usability in patients with sickle cell disease (SCD). A cross-sectional survey was completed by 99 adult SCD patients who participated in at least one telemedicine visit between March and July 2020. Telemedicine satisfaction and usability were assessed with the Telemedicine Satisfaction Questionnaire (TSQ) and System Usability Scale (SUS), respectively. Preference for video visits was assessed with a 1-10 rating scale, with 10 indicating the highest preference. Measures of anxiety, depression, and patient activation were also assessed. Linear and logistic regressions were performed to evaluate for socioeconomic and psychosocial correlates of telemedicine satisfaction, usability, and preference. Participants were 72% women, with a mean age of 39 years. The median (interquartile range [IQR]) TSQ was 56 (52-64) out of 70, indicating high satisfaction. The median (IQR) SUS was 72.5 (62.5-82.5) out of 100, indicating above average usability. Participants tended to prefer video visits for regular care (median [IQR] rating of 7 [5-9]) but not for management of acute pain (median [IQR] rating of 4 [2-8]). Neither satisfaction nor usability was associated with age or mental health. Telemedicine usability was positively associated with having private insurance compared with public insurance. Higher scores on both satisfaction and usability were associated with higher patient activation. Adults with SCD report good usability and high satisfaction with telemedicine, across multiple demographic groups. Therefore, telemedicine has valuable potential to improve access to high-quality care for these patients.
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