Assessment of Quality of Life for Thalassemia Patients in Palestine

Ashour, Fareeha
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Al-Quds University, Deanship of Scientific Research
Thalassemia is the most common hemoglobin disorder in the world; it is a critical issue in the Arab world and Palestine. This pilot study was conducted to evaluate the effect of the disease and its comorbidities on Palestinian patients’ quality of life, their adherence to iron chelators and satisfaction to health services provided to them. A cross-sectional study enrolled 25 patients of thalassemia major and intermedia from different cities in Palestine. These patients were evaluated for their quality of life using short form-36 questionnaire that consists of two domains (physical component summary-PMC, mental component summary- MCS). The overall scores for each item and for each domain were obtained, ranging from 0 to 100. 0-20 reflect poor, 20-40 reflect bad, 40-60 reflect good, 60-80 reflect very good, and 80-100 reflect excellent. In general, the highest score appears for the social functioning (80.5 ± 4.49) and the lowest one was for physical role (52 ± 9.79). The scores of thalassemia major (PCS 70.80 ± 11.84, MCS 66.47±12.91) were higher than thalassemia intermedia (PCS 61.01± 11.83, MCS 63.74± 8.26). Patients who transfused 12 Units/Year (U/Y) (PCS 63.19 ±12.80, MCS 63.78±11.69) acquired lower scores than patients who transfused 12-24 U/Y (PCS 77.32 ±10.62, MCS 73.43 ±9.57). Adherent patients (PCS 69.28±15.19, MCS 71.20 ±11.58) acquired higher scores than non-adherent patients (PCS 60.32 ±12.52, MCS 59.23 ±9.93). Only 56% of patients were adherent to their iron chelators while 44% were non-adherent. Mean value of patient satisfaction was higher in the north (72.5± 14.19) compared to the south (32.14±30.11) of Palestine. There is a huge need to exert more efforts to improve the quality of life (QoL) for thalassemia patients, since thalassemia has an influence on QoL and limits the physical functioning, mental health, vitality, general health and other physical and emotional abilities. Strategies need to be implemented to increase the adherence to iron chelators and patient satisfaction. A follow-up study that includes higher number of patients from different cities in Palestine is needed.