| Thalassemia major, the most common single-gene disorder in the world, can affect children early in life and requires lifelong treatment. The burdens of this chronic illness may negatively affect health-related quality of life. The child's ability to cope and adapt to living with a chronic illness may also affect his or her health-related quality of life. Thalassemia is more prevalent in countries in the Mediterranean such as Lebanon. For this study, 80 Lebanese children ranging in ages from 8 to 18 rated their health-quality of life and resiliency. Guided by Roy's Adaptation Model, this case-control study examined and compared self-rated quality of life and resiliency of Lebanese children with beta thalassemia major to their healthy counterparts. Additionally, relationships were examined amongst selected background traits and resiliency, along with self-reported health-related quality of life, to determine which variable(s) may predict health-related quality of life in Lebanese children with thalassemia. A convenient purposeful sample was obtained from a thalassemia clinic in Baabda, Lebanon. During their visit to the clinic, patients and their healthy siblings were asked to complete the Pediatric Quality of Life Inventory 4.0 and the Resilience Scale. Descriptive, comparative, and regression model statistics were used to analyze the data. The sample demographics included 40 case group participants (patients with thalassemia) and 40 control group participants (healthy siblings). The participants in the age groups 8 to 12 and 13 to18 years were observed to account for 38.8% and 61.2% of the total participants respectively. It was also observed that the number of male participants was high (57%) compared to the female participants (43%). Participants in the case group had a lower total quality of life than did the control group (t=2.46, df=78, p=0.0162). Physical functioning (t=2.88, df=78, p=0.0051) was more greatly affected than was the psychosocial functioning ( t=1.73, df=78, p=0.0879). Resiliency scores of the younger children group aged 8 to 12 years were lower than those of the healthy comparison group ((t=2.88, df=78, p=0.0051). In contrast, resiliency scores of the older group aged 13 to 18 were not significantly different than those of their counterparts. For this study, the variable most likely to predict or influence health-related quality of life in Lebanese children diagnosed with thalassemia major was resiliency. A limitation to this study was having a small, convenient sample from one center in Lebanon. Also, the resiliency scale used for this study had not been used in this Lebanese population before and, despite showing good reliability, did not show good validity. While having limitations, findings in this study have indicated the need for future research to focus on adaption interventions that foster resiliency in Lebanese children with thalassemia to help improve their health-related quality of life. |
