Continual or recurring illness that often requires extensive care by a Healthcare Professional (HCP) with the cooperation of the patient in managing their own disease.
Published in Chapter:
The Role of ICTs in the Management of Rare Chronic Diseases: The Case of Hemophilia
Leonor Teixeira (University of Aveiro/IEETA, Portugal), Vasco Saavedra (University of Aveiro, Portugal), Carlos Ferreira (University of Aveiro/CIO, Portugal), and Beatriz Sousa Santos (University of Aveiro/IEETA, Portugal)
Copyright: © 2013
|Pages: 15
DOI: 10.4018/978-1-4666-3990-4.ch033
Abstract
This chapter outlines a study that examines the role of Information and Communication Technologies (ICTs) in management of a rare and chronic disease, hemophilia. Evidence in literature shows how the adoption of ICTs can improve the management of chronic conditions. Furthermore, these tools may also give response to rare diseases’ needs, while greatly improving the quality of life of those patients. A Web-based application that was developed to facilitate communication between Healthcare Professionals (HCPs) and patients in a specific Hemophilia Treatment Center (HTC), to improve the utility and quality of clinical data and treatment information, as well as to help the management of resources involved in a specific rare chronic disease, represents a practical case presented in this chapter. This technological solution allows the management of inherited bleeding disorders, integrating, diffusing, and archiving large sets of data relating to the clinical practice of hemophilia care, more specifically the clinical practice at the Hematology Service of Coimbra Hospital Center.