Abstract
CONTEXT AND OBJECTIVE Patients with beta-thalassemia major (β-TM) experience physical, psychological and social problems that lead to decreased quality of life (QoL). The aim here was to measure health-related QoL and its determinants among patients with β-TM, using the Short Form-36 (SF-36) questionnaire. DESIGN AND SETTING Cross-sectional study at the Hematology Research Center of Shiraz University of Medical Sciences, in southern Iran. METHODS One hundred and one patients with β-TM were randomly selected. After the participants' demographics and disease characteristics had been recorded, they were asked to fill out the SF-36 questionnaire. The correlations of clinical and demographic factors with the QoL score were evaluated. RESULTS There were 44 men and 57 women of mean age 19.52 ± 4.3 years (range 12-38). On two scales, pain (P = 0.041) and emotional role (P = 0.009), the women showed significantly lower scores than the men. Lower income, poor compliance with iron-chelating therapy and presence of comorbidities were significantly correlated with lower SF-36 scores. These factors were also found to be determinants of worse SF-36 scores in multivariate analysis. CONCLUSIONS We showed that the presence of disease complications, poor compliance with iron-chelating therapy and poor economic status were predictors of worse QoL among patients with β-TM. Prevention and proper management of disease-related complications, increased knowledge among patients regarding the importance of managing comorbidities and greater compliance with iron-chelating therapy, along with psychosocial and financial support, could help these patients to cope better with this chronic disease state.
Highlights
Beta-thalassemia major (β-TM), known as Cooley’s anemia, is a hemoglobinopathy leading to chronic hemolytic anemia
The life expectancy and survival of these patients have increased dramatically over previous decades through introduction of regular blood transfusion therapy and iron-chelating therapies.[4,5,6]. As well as these patients’ survival, their quality of life (QoL) is believed to be lower than that of the normal population because of a variety of issues that these patients encounter during their lives, including the presence of comorbid chronic conditions, treatment components such as periodic regular hospital visits for regular transfusions and painful injections, appearance, absence of sexual development, infertility, inability to raise their own family, disease complications, uncertainties about the future, psychiatric disorders, and difficulties in employment and playing a role within society.[7,8]
Differences were only seen on two scales (BP and RE), such that the male patients showed significantly higher scores than the female patients (P = 0.041, P = 0.009 respectively)
Summary
Beta-thalassemia major (β-TM), known as Cooley’s anemia, is a hemoglobinopathy leading to chronic hemolytic anemia. The life expectancy and survival of these patients have increased dramatically over previous decades through introduction of regular blood transfusion therapy and iron-chelating therapies.[4,5,6] As well as these patients’ survival, their quality of life (QoL) is believed to be lower than that of the normal population because of a variety of issues that these patients encounter during their lives, including the presence of comorbid chronic conditions, treatment components such as periodic regular hospital visits for regular transfusions and painful injections, appearance, absence of sexual development, infertility, inability to raise their own family, disease complications, uncertainties about the future, psychiatric disorders, and difficulties in employment and playing a role within society.[7,8] Because of these factors, patients with β-TM experience many physical, psychological and social problems that lead to decreased QoL. Culture and education are two independent factors that influence the QoL of patients with β-TM to a great extent.[9]
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
