TIF 2.0: The Thal e-Course and TIF expert patients’ programme for disease-related education and self-management skills in thalassaemia

  • Victoria Antoniadou | thalassaemia-va@thalassaemia.org.cy Thalassaemia International Federation, Cyprus.
  • Michael Angastiniotis Thalassaemia International Federation, Cyprus.
  • Androulla Eleftheriou Thalassaemia International Federation, Cyprus.

Abstract

In response to the fundamental shift that has been taking place in the way chronic diseases are perceived and managed and the increasingly established role of patients as equal partners in the management of their condition, the Thalassaemia International Federation (TIF) has undertaken the design and development of a comprehensive online Expert Patients’ Programme (EPP) for patients with thalassaemia. Focusing particularly on β-thalassaemia, the most severe form of thalassaemia, the goal of the programme is to develop patients’ disease-related knowledge and self-care skills and enable them to co-manage their disease in a meaningful partnership with their treating physicians. An important goal of this ecourse is to empower patients to advocate for the improvement of national treatment services in every affected country. The aim of this article is threefold: (1) Relate TIF’s EPP with the goals and outcomes of other EPPs, as they are made available in the literature. (2) Describe the rationale and distinguishing features of TIF’s EPP on the basis of learning theories of knowledge acquisition and attrition, and best practices from the scientific disciplines of Human Computer Interaction (HCI) and Technology-Assisted Learning (TEL). (3) Relay the objectives of TIF’s EPP and the intended international impact in relation to TIF’s mission.

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Published
2018-04-19
Info
Issue
Section
14' International Conference on Thalassaemia and Other Haemoglobinopathies & 16' TIF Conference for Patients and Parents
Keywords:
Thalassemia, Hemoglobinopathies.
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How to Cite
Antoniadou, V., Angastiniotis, M., & Eleftheriou, A. (2018). TIF 2.0: The Thal e-Course and TIF expert patients’ programme for disease-related education and self-management skills in thalassaemia. Thalassemia Reports, 8(1). https://doi.org/10.4081/thal.2018.7495