Economic burden and associated factors among children with transfusion-dependent β-thalassemia in Guangxi, China: a cross-sectional multicenter study

Abstract Background Thalassemia is highly prevalent in southern China, but evidence on its economic burden among children remains limited. This study assessed the economic burden of children with transfusion-dependent β-thalassemia (TDT) in Guangxi, China. Methods A multicenter cross-sectional survey was conducted among children with TDT recruited through hospitals and patient networks. A structured questionnaire collected sociodemographic, household economic, healthcare-utilization, and cost data from the patient’s perspective. Generalized linear models and a two-part model were used to examine factors associated with annual medical costs. Results Data from 418 patients were analyzed. The mean annual economic burden per patient was 31,678.92 Chinese yuan (CNY; approximately 4,474 United States dollars), including 18,599.21 CNY in direct medical costs, 8,111.94 CNY in direct non-medical costs, and 4,967.77 CNY in indirect costs. The ratio of the sample mean annual burden to the sample mean annual household income was 48.60%. Older age, higher household income, and not receiving a subsistence allowance were associated with higher direct medical costs, whereas no household debt was associated with lower costs. Older age, body weight of at least 31 kg, Zhuang or other ethnicities, and not receiving a subsistence allowance were associated with higher outpatient costs. Patients aged 10–18 years had higher odds of incurring hospitalization costs, while household income of at least 60,000 CNY and not receiving a subsistence allowance were associated with higher costs among patients with positive hospitalization costs. Conclusions Children with TDT in Guangxi face a substantial economic burden relative to household economic resources. The findings support targeted financial protection and improved access to continuous long-term care.

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Publication Details

Journal
Orphanet Journal of Rare Diseases
Published
2026-09-28
DOI
https://doi.org/10.1186/s13023-026-04616-8
Primary Topic
Hemoglobinopathies and Related Disorders
Type
article
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Economic burden and associated factors among children with transfusion-dependent β-thalassemia in Guangxi, China: a cross-sectional multicenter study

Junling Weng, Bingxing Luo, Yuliang Xiang, Gongming Zhao et al.
Orphanet Journal of Rare Diseases
Hemoglobinopathies and Related Disorders
article

Economic burden and associated factors among children with transfusion-dependent β-thalassemia in Guangxi, China: a cross-sectional multicenter study

Junling Weng, Bingxing Luo, Yuliang Xiang, Gongming Zhao, Zian Xu, Jian Ming, Shanyan Zhou, Yingyao Chen, Tianshu Chu, Xinhua Zhang, Zhixu Zhu, Jingyi Qiao
article en

Abstract

Abstract Background Thalassemia is highly prevalent in southern China, but evidence on its economic burden among children remains limited. This study assessed the economic burden of children with transfusion-dependent β-thalassemia (TDT) in Guangxi, China. Methods A multicenter cross-sectional survey was conducted among children with TDT recruited through hospitals and patient networks. A structured questionnaire collected sociodemographic, household economic, healthcare-utilization, and cost data from the patient’s perspective. Generalized linear models and a two-part model were used to examine factors associated with annual medical costs. Results Data from 418 patients were analyzed. The mean annual economic burden per patient was 31,678.92 Chinese yuan (CNY; approximately 4,474 United States dollars), including 18,599.21 CNY in direct medical costs, 8,111.94 CNY in direct non-medical costs, and 4,967.77 CNY in indirect costs. The ratio of the sample mean annual burden to the sample mean annual household income was 48.60%. Older age, higher household income, and not receiving a subsistence allowance were associated with higher direct medical costs, whereas no household debt was associated with lower costs. Older age, body weight of at least 31 kg, Zhuang or other ethnicities, and not receiving a subsistence allowance were associated with higher outpatient costs. Patients aged 10–18 years had higher odds of incurring hospitalization costs, while household income of at least 60,000 CNY and not receiving a subsistence allowance were associated with higher costs among patients with positive hospitalization costs. Conclusions Children with TDT in Guangxi face a substantial economic burden relative to household economic resources. The findings support targeted financial protection and improved access to continuous long-term care.

Orphanet Journal of Rare Diseases
No poverty
Openalex Percentile: Top 12%
Hemoglobinopathies and Related Disorders
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Economic burden and associated factors among children with transfusion-dependent β-thalassemia in Guangxi, China: a cross-sectional multicenter study — Junling Weng, Bingxing Luo, et al. · Orphanet Journal of Rare Diseases (2026) | TGRS Research Map | TGRS