OBJECTIVES: β-Thalassemia is a regional and heredity hemolytic anemia and has become an increasingly severe public health problem. Patients with β-thalassemia major (β-TM), especially adult patients, are associated with physical, mental and social problems that result in decreased quality of life (QoL). However, there is a paucity of data on QoL and health status utility (HSU) among adult patients with β-TM in mainland China. Our study is to evaluate the QoL by SF-36 of adult patients with β-TM in mainland China, estimate their HSU by SF-6D, and identify factors affecting HUS values.

METHODS: In this cross-sectional study, the snowball sampling method was applied, involving 7 provinces across mainland China in 2021, focusing on Guangdong province and Guangxi Zhuang autonomous region, which has the highest incidence of thalassemia. An online questionnaire survey with two-round quality controls was conducted among the adult patients with β-TM. Utility scores were calculated for each adult patient from their SF-36 responses using the SF-6D algorithm with Hong Kong's tariff. Mean utility scores between different subgroups were calculated and compared. Ordinary least squares regression modeling was performed to determine factors associated with HSU.

RESULTS: 75 adult patients with β-TM were included in this study. The mean SF-36 score was 50.2±10.70, of which physical and mental scores were 47.57±11.28 and 52.85±14.21, respectively. The mean SF-6D utility score was 0.598±0.112, ranging from 0.391-0.962. Diagnosis with co-morbidity (β= -0.062, P=0.036) was significantly negatively associated with HUS value; the minimum pre-transfusion hemoglobin concentration (β=0.002, P=0.066) and social support (β=0.004, P=0.081) were positively associated with HUS value that differences were apparent.

CONCLUSIONS: This study presents poor QoL and HUS outcomes in Chinese adult patients with β-TM. The study also highlights the importance of social support and treatment compliance, which can ensure the QoL of patients. These estimates can be used for future clinical and economic studies.