Health related quality of life in Middle Eastern children with beta-thalassemia

Abstract

BackgroundThalassemia is a common disorder worldwide with a predominant incidence in Mediterranean countries, North Africa, the Middle East, India, Central Asia, and Southeast Asia. Whilst substantial progress has been made towards the improvement of Health related quality of life (HRQoL) in western countries, scarce evidence-based data exists on HRQol of thalassemia children and adolescents living in developing countries.MethodsWe studied 60 thalassemia children from Middle Eastern countries with a median age of 10 years (range 5 to 17 years). HRQoL was assessed with the Pediatric Quality of Life Inventory (PedsQL) 4.0. The Questionnaire was completed at baseline by all patients and their parents. The agreement between child-self and parent-proxy HRQoL reports and the relationship between HRQoL profiles and socio-demographic and clinical factors were investigated.ResultsThe scores of parents were generally lower than those of their children for Emotional Functioning (mean 75 vs 85; p = 0.002), Psychosocial Health Summary (mean 70.3 vs 79.1; p = 0.015) and the Total Summary Score (mean 74.3 vs 77.7 p = 0.047). HRQoL was not associated with ferritin levels, hepatomegaly or frequency of transfusions or iron chelation therapy. Multivariate analysis showed that a delayed start of iron chelation had a negative impact on total PedsQL scores of both children (p = 0.046) and their parents (p = 0.007).ConclusionsThe PedsQL 4.0 is a useful tool for the measurement of HRQoL in pediatric thalassemia patients. This study shows that delayed start of iron chelation has a negative impact on children’s HRQoL.

Thalassemia Major: how do we improve quality of life?

“…Scores across all domains were higher in present study as compared to other studies (Ayoub et al 2013; Caocci et al 2012; Gharaibeh and Gharaibeh 2012; Wahyuni et al 2011; Surapolchai et al 2010; Clarke et al 2010; Ismail et al 2006). This may be attributed to the better access to health care facilities and better control of iron overload related complications at this tertiary care center.…”

“…The lower scores in girls may be due to poor attention given to girl child in our society. On the contrary, some studies (Caocci et al 2012; Saha et al 2015) have reported better scores for girls and other studies have shown no difference between boys and girls (Thavorncharoensap et al 2010; Gharaibeh and Gharaibeh 2012; Torcharus and Pankaew 2011). …”

Long-term health-related quality of life evaluated more than 20 years after hematopoietic stem cell transplantation for thalassemia

“…10 HRQoL is generally conceptualized as a multidimensional construct referring to patients' perceptions of the impact of disease and treatment on their physical, psychological, and social functioning and well-being. 11 Although some previous studies have investigated HRQoL issues in thalassemia patients receiving conventional treatment with blood transfusions and iron chelation, [12][13][14][15][16][17] there is a paucity of evidence-based data on HRQoL after HSCT. Moreover, previous reports in this area are limited by small sample size and a relatively short follow-up ranging from 1 to 6.5 years.…”

Coping Behaviors in Parents of Children with Thalassemia major

“…Parents of the children with thalassemia major encounter various issues with taking care of their children. In order to provide the child and parents with proper cares, it is necessary to understand these problems (25,26).…”