Quality-of-life of patients living with thalassaemia in the West Bank and Gaza

Abstract

Background: In countries with low resources, the health and quality-of-life of people living with thalassaemia can be severely affected. Aims: This study examined the health-related quality-of-life of people living with thalassaemia in the West Bank and Gaza, Palestine. Methods: This was a cross-sectional study of a convenience sample of 104 patients (71 adults and 33 children) who lived with thalassaemia and their families in 2015 in the West Bank and Gaza. Participants were surveyed using the 36-item Short Form Health Survey, version 2 (SF36v2), Pediatric Quality of Life InventoryTM (PedsQL) and PedsQL Family Impact Module to assess their quality-of-life. With the SF36v2, we used normed-based scoring and for the PedsQL and Family Impact Module, we used the 0–100 scoring. Scores are reported as means and standard deviations and P < 0.05 considered statistically significant. Results: Quality-of-life scores were low across all domains, indicating poor quality-of-life. For bodily pain in the SF36v2, a significant difference was observed between the West Bank and Gaza. No significant differences were found between males and females. Data from the PedsQL showed no significant differences between the West Bank and Gaza. With the Family Impact Module, the summary score was higher among adults than among paediatric patients. Compared with other countries, thalassaemia patients in Palestine generally had lower quality-of-life scores in most domains. Conclusion: The lack of access to healthcare and blood transfusions, and the geopolitical challenges may be responsible for the low quality-of-life scores of patients living with thalassaemia in Palestine.