Article
Reference
Exploring the Challenges and Opportunities of eHealth Tools for Patients with Sickle Cell Disease
ISSOM, David-Zacharie, et al.
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.
ISSOM, David-Zacharie, et al . Exploring the Challenges and Opportunities of eHealth Tools for Patients with Sickle Cell Disease. Studies in Health Technology and Informatics , 2015, vol.
216, p. 898
PMID : 26262200
DOI : 10.3233/978-1-61499-564-7-898
Available at:
http://archive-ouverte.unige.ch/unige:77884
Disclaimer: layout of this document may differ from the published version.
1 / 1
Exploring the Challenges and Opportunities of eHealth Tools for Patients with Sickle Cell Disease
David-Zacharie Issom
a, Alexandra Zosso
b, Frederic Ehrler
c, Rolf Wipfli
c, Christian Lovis
c, Sabine Koch
aaDepartment of Learning, Informatics, Management and Ethics, Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden
bInstitute of Socio-Economics, Faculty of Sciences of the Society, University of Geneva, Geneva, Switzerland
cDivision of Medical Information Sciences, University Hospitals of Geneva, Geneva, Switzerland
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.
Keywords:
Sickle Cell Disease, eHealth, mHealth, telemedicine, self-care, self-management, self-monitoring, wearable devices.
Introduction
Sickle Cell Disease (SCD) is a complex hereditary form of anemia affecting millions of people throughout the world.
Patients mostly suffer from painful and debilitating vaso- occlusive crisis (VOC) lasting around 7 days. Usually, they are managed at home, and patients seek hospitals only when the pain cannot be controlled anymore or when life threatening complications occur. Patients can reduce the occurence of crisis with a good self-care. For instance by following a healthy diet, keeping a moderate body temperature, avoiding tiredness, low oxygen level and by taking appropriate medicine. Consequently, eHealth tools have an important role to play, as demonstrated with the self- management of patients with diabetes [1].
Methods
We performed a literature review to identify the main problems faced by patients and the existing e-Health solutions.
We used the term “sickle cell disease” with the terms
“system”, “mobile”, “cellular”, “self-management”,
”mHealth”, OR ”telemedicine” and searched in the usual data sources.
Results
We identified 15 relevant studies and listed them in Table 1.
Table 1 – Relevant studies of eHealth solutions for SCD N° Reference
1, 2, 3 Woods et al. 1998, 1999, 2000 4 Breslauer et al. 2009 5 Jacob & Gerla 2012 6 Jacob et al. 2012 7 Venugopalan et al. 2012
8 Youngchan Kim & YongKeun Park 2012 9 Cheng et al. 2013
10 Jacob, Duran, et al. 2013 11 Jacob, Pavlish, et al. 2013 12 Durfee et al. 2014
13 Gonzalez-Hidalgo et al. 2014
14 Panneerselvam 2014
15 Shah et al. 2014
Discussion and Conclusion
The low number of studies indicates little interest in the field but some papers proved the importance of using eHealth tools for SCD and showed various solutions. Patients often suffer from a lack of coordinated care and from a bad understanding of their needs. This is due to the relative uncommonness of the disease. Limited financial resources, poor patient health- literacy and existing beliefs can also prevent patients from making the most valuable health choices. Therefore, using eHealth to provide trustworthy information is recommended.
The reviewed papers show that eHealth tools can be useful for self-monitoring purposes. Few work has been actually done, but the potential of improving health outcomes is great.
Because the disease is often not diagnosed, mobile technologies can facilitated the screening and the diagnosis phases. A change in patients’ behavior can be influenced with mobile applications helping them to adopt and follow healthy practices, such as with daily advices or notifications. Further studies need to assess which technologies are able to tackle the main unmet patient needs.
Reference
[1] Årsand E, Tatara N, and Hartvigsen G, “Wireless and Mobile Technologies Improving Diabetes Self- Management,” pp. 136–156, 2011.
Address for correspondence David-Zacharie Issom, CH-1208 Geneva [email protected]
MEDINFO 2015: eHealth-enabled Health I.N. Sarkar et al. (Eds.)
© 2015 IMIA and IOS Press.
This article is published online with Open Access by IOS Press and distributed under the terms of the Creative Commons Attribution Non-Commercial License.
doi:10.3233/978-1-61499-564-7-898 898
