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The researcher assessed the beliefs and adherence associated with both oral deferasirox and deferoxamine infusion chelation therapies among Jordanian children with thalassemia major, and compared the adherence levels between the recipients of each. In this descriptive cross-sectional study, 120 participants were recruited from 3 major thalassemia treatment clinics in Jordan using convenience sampling. Data were collected through questionnaires on demographic- and disease-related information, the beliefs about medicines, and a medication adherence report scale. Most participants showed a high adherence to deferoxamine infusion and oral deferasirox (87.20% and 89.08%, respectively), and believed in the necessity of deferoxamine for maintaining health (89.34%). However, 41.32% of the participants had strong concerns about deferoxamine use. While most participants believed in the need for oral deferasirox (89.84%), about 40.7% had strong concerns about its use. An independent samples t test showed no statistically significant difference in the adherence between the oral deferasirox and infusion deferoxamine recipients (t=1.048, DF=118, P=0.075). Jordanian children with thalassemia have positive beliefs and adherence to both oral and infusion chelation therapies. Health care providers should pay attention to patients' beliefs and discuss the major concerns pertaining to iron chelation therapy with them to enhance the continuity of adherence therapy.

Objectives: Iron chelation treatment (ICT) in beta-thalassemia major (beta-TM) patients undergoing blood transfusions can cause low satisfaction, low compliance, with possible negative consequences on treatment success, patients' wellbeing, and costs. The purpose was to estimate the societal burden attributable to beta-TM in terms of direct and indirect costs, health-related quality-of-life (HRQoL), satisfaction and compliance with ICT in patients undergoing transfusions and ICT., Research Design and Methods: The naturalistic, multicenter, longitudinal Italian-THAlassemia-Cost-&-Outcomes-Assessment (ITHACA) cost-of-illness study was conducted involving patients of any age, on ICT for at least 3 years, who were enrolled at 8 Italian Thalassemia Care Centers. Costs were estimated from the societal perspective, quantified with tariffs, prices, or net earnings valid in 2006., Results: One-hundred and thirty-seven patients were enrolled (median age = 28.3, 3-48 years, 49.6% male) and retrospectively observed for a median of 11.6 months. Mean direct costs were euro1242/patient/month, 55.5% attributable to ICT, 33.2% attributable to transfusions. Relevant quantity and quality of productivity was lost. Both physical and mental components of HRQoL were compromised. Little difficulties remembering to take ICT and positive satisfaction with the perceived effectiveness of therapy were declared, but not good levels of satisfaction with acceptance, perception of side effects and burden of ICT., Conclusions: The management of beta-TM patients undergoing transfusions and ICT is efficacious, although costly, but overall benefits were not always perceived as optimal by patients. Efforts must be focused to improve patients' acceptance and satisfaction with their therapy; this would contribute to a better compliance and hence an increase in treatment effectiveness and patients' overall wellbeing, with expected improved allocation of human and economic resources.

Comprehensive care for thalassemia major (TM) patients has achieved great advances in the world, yet psychosocial developmental aspects of care in families with afflicted members has made only limited progress. Besides confronting the disease itself, a major task for children with TM is to develop into autonomous, healthy, and functioning adults. An emerging concept in considering the adjustment of children with chronic physical disorders is "quality of life"(QL). To study the QL with regard to reflection by psychosocial adjustment in TM children, we enrolled 55 TM patients undergoing intravenous (IV) and/or oral iron chelation, 39 of whom completed the content on issues related to QL according to Cramer and Devinsky. It was concluded that oral iron chelation can be better adjusted than IV iron chelation for a thalassemic child. This favors its use, but not necessarily in combination with IV iron chelation. Perception gaps that arise from age or generation merit concern. This approach to the study of QL, as reflected by psychosocial adjustment in children with TM, is an excellent method for learning about parental-child adjustment regarding a chronic physical condition such as TM.

Thalassemia was first described by Cooley and Lee in 1952 in several Italian children as a severe anemia with spleen and liver enlargement, skin discoloration, and bony changes. Great strides in management and intervention have not been matched by progress in psychosocial rehabilitation. Because parental stress and adaptation are of concern, this study focuses on parental stress and adjustment in response to the disease process of their afflicted children in western Taiwan. The parents of 18 thalassemia major patients (under 12 years of age) were interviewed (in two sessions) to determine their feelings, sources of stress, and support during their childrens' disease process. The study found that: 1) many parents suffer from stress as a result of the disease process, 2) all parents had similar concerns about iron chelation treatment, and 3) some resilience factors were present in the support system.

Background: Longtime outcome in case of thalassemia depends on the patients' adherence in home treatment to reduce hemosiderosis. This study describes the patients' perspective, their typical coping strategies, health related locus-of-control-beliefs and psychosocial influences on adherence., Patients and Methods: A battery of questionnaires was employed to 43 patients with thalassemia major (3 to 26 years old) treated in Germany according to the german multicenter study respectively their parents: the Ulm Thalassemia Inventory, the KIDCOPE, the Multidimensional Health Locus of Control Scales and the Giessen Complaint List. Clinical symptoms of hemosiderosis were correlated with psychosocial variables., Results: The patients feel more distressed from their treatment than from their illness itself. They react to disease-related distress with a variety of coping strategies. Some of the most frequent coping strategies are maladaptive, indicating feelings of helplessness. Internal locus-of-control-beliefs were low and fatalistic locus-of-control-beliefs were high compared with other clinical groups. The self-reported adherence to the iron chelation treatment is correlated with age, gender, age at the start-point of the treatment and emotional distress. Complaints, coping strategies and locus of control are independent from adherence as well as from hemosiderosis., Conclusion: Patients with thalassemia major need more information about their disease and about the benefits of iron chelation therapy. Additional psychosocial support should reduce emotional distress, strengthen coping competence and lead to a better integration of therapy in daily life.