OBJECTIVES: β-thalassemia major is an autosomal recessive genetic disease which causes death and disability. The quality of life of adult patients with β-thalassemia major is significantly lower than that of children with β-thalassemia major due to the serious complications. Therefore, the adult patients with β-thalassemia major make lifelong care necessary. Moreover, the caregivers of adult patients bear not only the physical pressures of caring, but also the emotional and economic ones. Thus, this study examined the predictors of caregiver burden in adult patients with β-thalassemia major in China.

METHODS: In this cross-sectional study, 75 adult patients with β-thalassemia major and their respective 75 caregivers were recruited across China. Caregiver burden was assessed using the Zarit Burden Interview (ZBI). Sociodemographic data and disease-related characteristics of the patients, and sociodemographic data of the caregivers were also collected. The data were analyzed using independent t-tests, and multiple linear regression.

RESULTS: Out of the 75 patients, 50.7% were male, and the median age was 22 years. The median age of caregivers was 51 years, with female (74.7%) predominant. The ZBI score was 38±17.02. Moreover, multiple linear regression yielded that the patients who interrupted blood transfusion therapy, and the caregivers who also needed to take care of others were positively associated with ZBI score (p<0.05). And married caregivers were negatively correlated with ZBI scores (p<0.05).

CONCLUSIONS: The caregivers of adult patients with β-thalassemia major experienced a moderate to severe level of caregiving burden in China. Caregivers experienced a higher care burden when the patients interrupted blood transfusion therapy, or the caregivers also needed to take care of others. However, married caregivers experienced less burden than those non-married. These findings provide a reference to identify those with higher caregiver burden of patients with thalassemia, and the targeted interventions for alleviating caregiver burden are needed.