Quality of Life in Thalassemia

Abstract

Morbidity and mortality related to thalassemia have been reduced significantly with modern medical treatment, and quality of life (QOL) should now be considered an important index of effective health care. An assessment of QOL differs from other forms of medical assessment in that it focuses on the individuals' own views of their well-being and assesses other aspects of life, giving a more holistic view of well-being. There is very little published work on evaluation of QOL in thalassemia. A suitable tool should be reproducible, sensitive to the major features of the condition that affect patients' lives, and applicable in the range of different cultural, age, and social settings. Such an instrument would be valuable in evaluating new forms of treatment and in comparing health outcomes between different clinics. Two instruments have been assessed, one derived from the WHOQOL-100 questionnaire, and one designed specifically for thalassemia, which assesses psychosocial and clinical burden, as they affect adult patients, parents, and children. Further studies are required to develop and assess such tools for use in thalassemia. Another approach is to seek patients' own views of their routine treatment and the extent to which medical treatment affects QOL. Results from patient questionnaires in the United Kingdom and Cyprus are consistent in finding problems with organization of transfusions, insufficient options with chelation therapy, and poor communication. Practical measures could be taken to address these issues.

Quality of life among Ardabil patients with beta-thalassemia major

“…Such a difference is not surprising since due to special physical conditions and problems related to their disease, patients are not anticipated to have a very good quality of life. 8 The results of a study conducted by Safizadeh et al, on the quality of life among patients affected with thalassemia major aged sixteen years and older, in Kerman city revealed that they had a good quality of life in all domains, as in his study the highest score was seen in PF and SF, and the lowest score in BP and MH. 11 Another study conducted by AzarKeivan on the quality of life among patients affected with thalassemia (major and intermediate) aged eighteen years and older, in Tehran city revealed that they had a very good quality of life in all domains except for MH and BP compared to this present study, in her study the highest score was seen in PF and SF, and the lowest score in BP and MH.…”

“…7 It is then anticipated that effective and suitable life background would be prepared for them in the society and they become as active as other members of the society. 8 An increase in the life expectancy is accompanied by certain challenges such as bone diseases, infertility, consecutive referrals for blood transfusion, subcutaneous infusion of chelators, and moral stresses, which these aforementioned problems would affect mental, physical, social and educational functions of these patients. 1,7 Hence, authorities who provide services to patients should be aware of the related mental and social consequences in addition to the burden of this disease, just like any other chronic disease, to prepare better living environment for these patients.…”

“…1,7 Hence, authorities who provide services to patients should be aware of the related mental and social consequences in addition to the burden of this disease, just like any other chronic disease, to prepare better living environment for these patients. 8 Therefore, in this study, we aimed to measure the Quality of life in patients with beta-thalassemia major using SF-36 for the first time in who referred to Thalassemia Clinic of BU-Ali Hospital in Ardabil, Iran.…”

Can the Availability of Unrestricted Financial Support Improve the Quality of Care of Thalassemics in a Center with Limited Resources? A Single Center Study from India

“…However, morbidity and mortality related to thalassemia have been reduced significantly with modern medical treatment, and HRQoL should now be considered as an important index of effective health care. 16,17 An assessment of HRQoL differs from other forms of medical assessment in that it focuses on the individuals' own views of their well-being and assesses other aspects of life, giving a more holistic view of well-being.…”

The Impact of Educational Counseling Program on Quality of Life of Thalassemia Patients

“…One of the ways to achieve this goal is to educate thalassemia patients to improve their quality of life and help them deal with the effects and complications of the disease. On the other hand, training the points of caregiving for thalassemia patients is one of the main components of the treatment process to improve self-care behaviors and encourage the patients to participate in training courses (15). Education plays a central role in managing chronic diseases and is an essential component of thalassemia control (16).…”