Assessing the Quality of Life of Parents of Children With Thalassemia: A Cross-Sectional Study in Medina City, Saudi Arabia.

BACKGROUND

Thalassemia is a group of genetic disorders that result in a lack of hemoglobin (Hb) production. Children with thalassemia rely on regular blood transfusions for survival, which places a significant burden on their families and negatively impacts their quality of life (QOL).

OBJECTIVE

This study aimed to assess QOL from the perspective of parents of thalassemic children in Medina City, Saudi Arabia.

METHOD: A cross-sectional study was conducted among 52 parents in Medina through September and October 2023 using a socio-demographic and clinical characteristic questionnaire and an assessment of parents' QOL.

RESULTS

The study was conducted among 52 parents in Medina, with a mean (standard deviation (SD)) age of 44.4 (9.5). Most participants (63.5%) were males, 90.4% were married, and 61.5% had one child with thalassemia. The majority (84.6%) had a blood transfusion every three weeks, and 80.8% had Hb before transfusion less than 9 gm/dL. The mean (SD) QOL and health score was 246.4 (51.2) out of 400. The parent's low income (p<0.001) and being non-Saudi parents (p=0.017) were significant factors for low QOL and health.

CONCLUSION

Parents with thalassemic children revealed moderate QOL and health in Medina City, Saudi Arabia. Low income and expatriation negatively affected the parents' QOL and health. These results emphasize the need for financial support through assistance programs to alleviate the financial burden on these families. Additionally, specialized thalassemia treatment centers should be established to ensure easy access to comprehensive healthcare services.