School of Medicine and Health Management, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, China.
School of Public Health, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, China.
Orphanet J Rare Dis. 2020 Jun 5;15(1):137. doi: 10.1186/s13023-020-01423-7.
Hemophilia, a high-cost disease, is the only rare disease covered by basic medical insurance in all province of China. However, very few studies have estimated the medical expenditure of patients with this rare disease Therefore, this study is aimed at evaluating the medical expenditure of patients with hemophilia and identifying its determinants.
The study population included 450 patients with hemophilia who were extracted from the national insurance database between 2014 and 2016. An independent-sample Kolmogorov-Smirnov test was performed to compare the medical expenditure of patients with hemophilia covered under urban employee basic medical insurance (UEBMI) and urban residence basic medical insurance (URBMI). Quantile regression analysis was conducted to explore the factors that affect the medical expenditure of patients with hemophilia.
The total annual medical expenditure of patients with hemophilia in 2013, 2014, and 2015 had median of ¥7167 (US$ 1156), ¥3522 (US$ 577), and ¥4197 (US$ 677), respectively. The median medical expenditures of patients with hemophilia covered by UEBMI were ¥10,991 (US$ 1773), ¥2301 (US$ 377) and ¥8074 (US$ 1302), those of patients covered by URBMI were ¥4000 (US$ 645), ¥5717 (US$ 937) and ¥3141 (US$ 507) from 2013 to 2015. The differences in the medical expenditure of patients with hemophilia between UEBMI and URBMI from 2013 to 2015 were statistically significant. The number of admissions and the number of hospital days were statistically significant and positive for all quantiles. The types of medical service were statistically significant and negative for 50th quantile, and the reimbursement ratio was statistically significant and positive for 50th and 75th quantiles. (p < 0.05).
The medical expenditure of patients with hemophilia was lower than that of patients with other common rare diseases that were not included in the scope of basic medical insurance reimbursement. It was also observed that the medical expenditure was mainly influenced by the severity of disease, and partly affected by the reimbursement rate.
血友病是一种高费用疾病，是中国所有省份基本医疗保险覆盖的唯一罕见病。然而，很少有研究估计这种罕见病患者的医疗支出。因此，本研究旨在评估血友病患者的医疗支出，并确定其决定因素。
本研究人群包括从 2014 年至 2016 年国家保险数据库中提取的 450 名血友病患者。采用独立样本 Kolmogorov-Smirnov 检验比较城镇职工基本医疗保险（UEBMI）和城镇居民基本医疗保险（URBMI）覆盖的血友病患者的医疗支出。采用分位数回归分析探讨影响血友病患者医疗支出的因素。
2013 年、2014 年和 2015 年血友病患者的年总医疗支出中位数分别为人民币 7167 元（1156 美元）、3522 元（577 美元）和 4197 元（677 美元）。UEBMI 覆盖的血友病患者的医疗支出中位数分别为人民币 10991 元（1773 美元）、2301 元（377 美元）和 8074 元（1302 美元），URBMI 覆盖的血友病患者的医疗支出中位数分别为人民币 4000 元（645 美元）、5717 元（937 美元）和 3141 元（507 美元）。2013 年至 2015 年，UEBMI 和 URBMI 覆盖的血友病患者的医疗支出差异具有统计学意义。所有分位数的住院次数和住院天数均具有统计学意义且为正相关。各种医疗服务类型在第 50 分位数具有统计学意义且为负相关，而报销比例在第 50 分位数和第 75 分位数具有统计学意义且为正相关。（p<0.05）。
血友病患者的医疗支出低于未纳入基本医疗保险报销范围的其他常见罕见病患者。此外，研究还发现，医疗支出主要受疾病严重程度影响，部分受报销比例影响。
