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.
Highlights
Increasingly established role of patients as equal partners in the man- have been conceived as a tool for the management of chronic disagement of their condition, the Thalassaemia International eases, developing patients’ self-care skills, self-efficacy and confi
E The aim of this article is threefold: s (1) Relate TIF’s Expert Patients’ Programmes (EPPs) with the goals and outcomes of other EPPs, as they are made available in the literature
EPPs draw on social and psychological theories (Bandura, 1977) and the hypothesis that, self-efficacy i.e., ability to effectively cope with and manage with treatment, leads to Thalassaemia is an inherited condition in which the genes that the initiation of a coping behaviour - a behavioural change to promote are responsible for producing haemoglobin are damaged or absent. adherence to prescribed treatment and self-manage or seek help to Haemoglobin is the protein inside the red blood cells that trans- resolve everyday disease-related problems as they arise
Summary
Increasingly established role of patients as equal partners in the man- have been conceived as a tool for the management of chronic disagement of their condition, the Thalassaemia International eases, developing patients’ self-care skills, self-efficacy and confi-. EPPs draw on social and psychological theories (Bandura, 1977) and the hypothesis that, (patients’) self-efficacy i.e., ability to effectively cope with and manage with treatment, leads to Thalassaemia is an inherited condition in which the genes that the initiation of a coping behaviour - a behavioural change to promote are responsible for producing haemoglobin are damaged or absent.
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