Development and Validation of a Multidimensional Expectation Questionnaire for Thalassaemia Major Patients

Abstract

Nowadays, thalassaemia major (TM) patients are surviving into mature young adulthood; however, no published instrument exists to measure the expectations’ dimensionality among older TM patients in their thirties. This study seeks to validate a novel multidimensional expectation questionnaire suitable for TM patients (MEQ-TMP) reaching their fourth decade of life. In order to establish the psychometric properties of the instrument, data analysis was carried out. The principal component analysis revealed four components (‘Supportive social network’; ‘Raising one’s own family’; ‘Career advancement’; ‘Ability of daily activities’). Their cumulative contribution rate was 66.32%. Cronbach’s alpha for the total scale was 0.87. Each subscale had an alpha value above 0.70; three subscales were in the 0.80 range. MEQ-TMP reliability was proved to be good. The known-group method served as a strategy in examining the operationalisation of the questionnaire’s constructs. The present MEQ-TMP, developed for the aged group of TM patients, would be a useful tool for clinical personnel providing care to TM patients in understanding their outlook on life as they are growing up, to have better psychosocial adjustment to illness chronicity, live life as normally as possible, and fulfill their ambitions; thus enhancing their life satisfaction and quality of life.

The Outcomes of Patients with Haemoglobin Disorders in Cyprus: A Joined Report of the Thalassaemia International Federation and the Nicosia and Paphos Thalassaemia Centres (State Health Services Organisation)

“…The majority of patients are employed or retired, while the unemployment rate is 8.2%. In a study from Greece [26], a group of 109 adult thalassaemia patients had a similar rate of paid employment (77%), while a higher percentage, 23%, were unemployed, consistent with the country's general unemployment rate. Overall, there are very few recent publications dealing with the issue of employment in thalassaemia patients and the comparisons are difficult due to very different social and cultural environments.…”

“…Cultural similarities in terms of marriage practices can be compared between Cyprus and Greece or Italy. In the Greek study [26], 36.7% of patients were married, very similar to the Cypriot group, while 52.9% were unmarried or divorced (in the Cypriot group these categories account for 49.3%, and if cohabitation is added then 51.5% are accounted for, almost identical proportions). In an international study conducted by the ICET-A group, which studies mainly endocrinological complications of thalassaemia [27], in a thalassaemia population numbering 966 (consisting of both regularly transfused and non-transfusion-dependent patients from both Europe and Asia, including Cyprus), only 24.8% were married or cohabiting; in both the current study and in the ICET-A study, among adult Cypriot patients, over 50% had fulfilled this life ambition.…”

“…These are indicators of patient confidence in life and in their treatment, and of a desire to fulfil much of life's normal expectations. Education and employment status of β-thalassaemia patients in Cyprus is summarized in Table 4 and compared with cohorts originating from Greece and Iran in Table S4 [25,26]. The majority of patients are employed or retired, while the unemployment rate is 8.2%.…”

The Expectations of the Learners in Lifelong Learning Programs Provided by Lifelong Learning Centers in Greece

“…This topic needs further research and could be the subject of a completely new research, as indicated in the section on suggestions for further research (see Section 5 for details). Figure 3 presents the learners' expectations of the educator as they emerged from the thematic analysis of the interview data: According to Georgogiannis (2010), Koutelekos and Chaliasos (2014), there are different expectations in terms of quality, which can be divided into positive and negative ones. The first category includes those who hope for success, while the second category includes those who are fearful of success.…”

“…When success is part of these expectations, they are called success expectations and have a positive connotation, whereas when there is a fear of failure, they are called negative expectations with a clearly negative connotation. In the first case, individuals may improve their performance, while, in the second case, they may become weaker, making wrong choices (Georgogiannis, 2010;Koutelekos & Chaliasos, 2014). There are many different factors that influence and shape expectations (Sofitsi, 2016).…”