Factors affecting health-related quality of life in Thai children with thalassemia

Abstract

BackgroundKnowledge of the factors associated with health-related quality of life (HRQOL) among patients with thalassemia is essential in developing more suitable clinical, counseling, and social support programs to improve treatment outcomes of these patients. In light of the limited research in this area, this study aims to examine factors associated with HRQOL among children and adolescents with thalassemia in Thailand.MethodsA cross-sectional survey was conducted in three selected hospitals in Thailand during June to November 2006. PedsQL™ 4.0 Generic Core Scale (Thai version) was used to assess HRQOL in 315 thalassemia patients between 5 and 18 years of age. Other related clinical characteristics of the patients were collected via medical record review.ResultsThe mean (SD) of the total summary score was 76.67 (11.40), while the means (SD) for the Physical Health Summary score and Psychosocial Health Summary score were 78.24 (14.77) and 75.54 (12.76), respectively. The school functioning subscale scored the lowest, with a mean of 67.89 (SD = 15.92). The following factors significantly affected the HRQOL of the patients: age; age at onset of anemia and age at first transfusion; pre-transfusion hemoglobin (Hb) level; receiving a blood transfusion during the previous three months; and disease severity. In addition, iron chelation therapy had a significant negative effect on HRQOL in the school functioning subscale. In contrast, serum ferritin level, frequency of blood transfusions per year, and gender were not significantly related to HRQOL among these patients. The results from multivariate analysis also confirmed these findings.ConclusionsTo improve HRQOL of thalassemia patients, suitable programs aimed at providing psychosocial support and a link between the patient, school officials, the family and the physician are important, especially in terms of improving the school functioning score. The findings also confirmed the importance of maintaining a pre-transfusion Hb level of at least 9-10.5 g/dL. In addition, special care and attention should be given to patients with a severe condition, and those who are receiving subcutaneous iron chelation therapy.

Quality of Life Among Thalassemia Children Patients in the Gaza Strip

“…Moreover; repeated hospitalizations and hospital visits will lead to frequent absenteeism from school, which will impact their educational performance and social relationships. For example, iron chelation therapy was found to have a significant negative effect in the school functioning subscale [2]. The QOL of thalassemia children are affected by multiple factors, such as family income and a family history of thalassemia.…”

“…Thalassemia has been encountered practically in every racial group and geographical location in the world. However, it is more common among individuals originating from tropical and subtropical regions [1] and it is considered a serious public health issues in the Mediterranean area [2].…”

“…Thalassemia is considered an exhausting, patient suffering disease from two aspects; the chronic nature of the disease itself in terms of frequent hospital visits, drug availability, side effects of drugs and disease complications [1,2] implications of the disease on the quality of life (QOL) of patients regarding the physical, psychological, emotional, and social aspects [10].…”

Comparison of Blood Transfusion Plus Chelation Therapy and Bone Marrow Transplantation in Patients with ??-Thalassemia: Application of SF-36, EQ-5D, and Visual Analogue Scale Measures

“…6 Long, regular and unpleasant therapeutic regimens influence all aspect of patients' lives, including mental health, social life, and health-related quality of life (HRQoL). [7][8][9][10][11][12] Over the last 2 decades, there has been an increasing interest in assessment and improvement of HRQoL in patients with chronic diseases. 13 In addition, due to limited resources in the healthcare systems, the demand for analyzing the costeffectiveness of treatments is increasing.…”

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, the Jeevan Asha patients had demonstrated a significantly better score as compared to the Control patients in all the four domains of the PCS, and three domains of the MCS namely vitality, role emotional and social functioning of SF 36 v2. In a study conducted on Thai children, 22 it was found that pre-transfusion hemoglobin level, frequency of blood transfusion and disease severity were significant predictors of HRQoL of thalassemic children in Thailand. In our study, the Jeevan Asha Patients had a better score as compared to the Control group because of regular pre-planned blood transfusion.…”