Meeting Sickle Cell Patients’ Unmet Needs with eHealth Tools: A Preliminary Study

David-Zacharie Issom
Health Informatics Centre, LIME, Karolinska Institutet, Stockholm, Sweden

Alexandra Zosso
Institute of Socio-Economics, Faculty of Sciences of the Society, University of Geneva, Geneva, Switzerland

Rolf Wipfli
Division of Medical Information Sciences, Geneva University Hospitals, Geneva, Switzerland

Frederic Ehrler
Division of Medical Information Sciences, Geneva University Hospitals, Geneva, Switzerland

Christian Lovis
Division of Medical Information Sciences, Geneva University Hospitals, Geneva, Switzerland

Gunnar Hartvigsen
Norwegian Centre for Integrated Care and Telemedicine, University Hospital of North Norway, Tromsø, Norway / Department of Computer Science, University of Tromsø – The Arctic University of Norway, Tromsø, Norway

Christian Kjellander
Department of Medicine, Division of Hematology, Karolinska University Hospital and Karolinska Institutet, Stockholm, Sweden

Kaveh Samii
Department of Hematology, Geneva University Hospitals, Geneva, Switzerland

Sabine Koch
Health Informatics Centre, LIME, Karolinska Institutet, Stockholm, Sweden

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Ingår i: SHI 2015, Proceedings from The 13th Scandinavien Conference on Health Informatics, June 15-17, 2015, Tromsø, Norway

Linköping Electronic Conference Proceedings 115:11, s. 66-77

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Publicerad: 2015-06-26

ISBN: 978-91-7685-985-8

ISSN: 1650-3686 (tryckt), 1650-3740 (online)


Background: Sickle cell disease is the most prevalent inherited blood disorder in the world. It can lead to many life-threatening chronic issues and comorbidities. The prevalence of the disease is more important in developing countries. In developed countries, self-help solutions for chronic patients are rising and are increasingly used. E-Health tools become companions for selfmanaging patients. Problem: The use of mobile applications to support the selfmanagement of chronic diseases has proved to improve the quality of life of patients. We try to identify the opportunities for people with Sickle Cell disease created by the use of such tools and investigate what are the patients’ main concerns. Method: We have performed a literature review to under-stand the main challenges of the disease. Additionally, we sent a questionnaire to patients to identify their needs. Finally we researched how the potential use of eHealth tools and Information and Communication Technologies based solutions could resolve some issues. Results: The literature review has shown a low number of contributions but these studies had mainly positive outcomes. The results of the questionnaire have shown a significant dissatisfaction from patients about the health care system taking care of them. Patients’ responses also showed their will to improve their general knowledge about the disease and their interest in using e-Health tools for improving their quality of life.


Sickle cell disease; eHealth; mHealth; self-care; self-management; self-monitoring; self-help devices; wearable devices; quantified self; public health informatics; global health; uHealth


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