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Updated: Apr 5, 2026

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Exploring the Challenges and Opportunities of eHealth Tools for Patients with Sickle Cell Disease
David-Zacharie Issom1, Alexandra Zosso2, Frederic Ehrler3
1Department of Learning, Informatics, Management and Ethics, Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden.
Abstract:
Sickle cell disease (SCD) is the most prevalent inherited blood disorder in the world. The symptoms decrease the quality of life of patients and can cause premature death. Self-help solutions for chronic patients are rising and increase the quality of life of patients. We are interested to identify the usefulness of eHealth tools for patients with SCD. We did a literature review to identify the main problems faced by patients and the existing eHealth solutions. The results show a low number of studies in the field but a multi-disciplinary interest. Positive health benefits for patients are reported as well as the need for more research. Patients and caregivers lack of education about the disease, healthy behaviors are unknown and clinical best practices underused. E-health tools can offer an appropriate support for the self-management of SCD by improving the quality of life of patients, by enhancing patient health literacy and by allowing clinicians to make better decisions.
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