TIF 2.0: The Thal e-Course and TIF Expert Patients’ Programme for Disease-Related Education and Self-Management Skills in Thalassaemia

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. (Lorig et al. 1999, p. 5).Self-management is understood as "the individual's ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent to living with a chronic condition" and should necessarily include the "ability to monitor one's condition and to effect the cognitive, behavioural and emotional responses necessary to maintain a satisfactory quality of life" (Barlow et al., 2002). Expert Patients' Programmes (EPPs) have been conceived as a tool for the management of chronic diseases, developing patients' self-care skills, self-efficacy and confidence and support them to achieve a better quality of life (Donaldson, 2003;Griffiths et al., 2007).Professor Kate Lorig and her colleagues at Stanford University, California were the first to tap on the value of such programmes, developing and evaluating programmes for people with arthritis. The EPP tradition was soon adopted by several countries of the world e.g., in the United Kingdom, and countries in Europe (especially Scandinavia), Australasia, and North America for the needs of patients with various chronic diseases such as diabetes and in various formats i.e., lay-led by trained leaders and not health professionals such as nurses (Griffiths et at., 2005). With this approach, earlier EPPs in England aspired to reduce costs for national healthcare systems by reducing patients' hospital visits based on the rationale that increasing self-efficacy (confidence) is a prerequisite for behaviour change, which through improved self-management, may influence health and healthcare use (Griffiths et al., 2007).The advent of Web 2.0 technology ushers in a new period for the health industry and EPPs, enhancing the possibilities and opportunities beyond time and physical space, fostering great potential for social support and thus new methods for enhancing self-management skills, self-esteem, and self-efficacy. Murray (2012) locates Web-based interventions in three main clinical areas: (1) self-management of long-term conditions (e.g., diabetes, heart disease, arthritis, and asthma), (2) health promotion (e.g., smoking cessation, alcohol reduction, sexual health, diet, and exercise), and (3) mental he...