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医疗保险方案和慈善援助项目对中国重度甲型血友病男童常规预防治疗的影响。

Influence of medical insurance schemes and charity assistance projects on regular prophylaxis treatment of the boys with severe haemophilia A in China.

机构信息

Department of Pediatrics, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College, Beijing, China.

School of Pharmaceutical Science and Technology, Tianjin University, Tianjin, China.

出版信息

Haemophilia. 2018 Jan;24(1):126-133. doi: 10.1111/hae.13372. Epub 2017 Nov 17.

Abstract

OBJECTIVE

To explore the influence of medical insurance policy and charity assistance projects on the uptake and discontinuation of regular prophylaxis treatment in Chinese severe haemophilia A children.

METHODOLOGY

This retrospective study was conducted on children with severe haemophilia A, who received FVIII prophylaxis treatment at 12 haemophilia centres in China from 1 November 2007 to 31 May 2013.

RESULTS

The average duration of prophylaxis treatment received by haemophilia children significantly increased from 16.7 weeks in 2008 to 32.8 weeks in 2012 (P < .001). The main reason for prophylaxis acceptance included dissatisfaction with previous "on-demand" regimens, availability of improved local medical insurance policies and patient/family awareness of haemophilia. The main reason for subsequent discontinuation of prophylaxis was economic instability. The upper limit of insurance was up to RMB 150 000/y (~USD: 22 000/y) for 80.1% of the insured patients and would be sufficient to cover the continuous low-dose prophylaxis regimen. However, for many patients the burden of out-of-pocket copayment cost represented a risk for poor adherence to regular prophylaxis. In about two third of the patients, the annual out-of-pocket copayment cost amounted to >50% of their average annual disposable income. Many patients therefore required assistance from the charity assistance projects, but nonadherence remained prevalent.

CONCLUSION

Medical insurance policy and charity assistance projects helped haemophilia children to accept and continue prophylaxis regimens. It was the proportion of the out-of-pocket copayment cost rather than the upper limit of insurance reimbursement that restricted long-term regular low-dose prophylaxis in China.

摘要

目的

探讨医疗保险政策和慈善援助项目对中国重度血友病 A 患儿接受和停止常规预防治疗的影响。

方法

本回顾性研究纳入了 2007 年 11 月 1 日至 2013 年 5 月 31 日在中国 12 个血友病中心接受 FVIII 预防治疗的重度血友病 A 患儿。

结果

血友病患儿接受预防治疗的平均持续时间从 2008 年的 16.7 周显著增加至 2012 年的 32.8 周(P<0.001)。接受预防治疗的主要原因包括对先前“按需”方案的不满、当地医疗保险政策的改善以及患者/家庭对血友病的认识。随后停止预防治疗的主要原因是经济不稳定。80.1%的参保患者的医疗保险上限高达 15 万元/年(约合 2.2 万美元/年),足以覆盖持续的低剂量预防治疗方案。然而,对于许多患者来说,自付费用的负担代表了其对常规预防治疗的依从性风险。在大约三分之二的患者中,年自付费用占其平均可支配年收入的比例>50%。因此,许多患者需要慈善援助项目的帮助,但仍存在不依从的情况。

结论

医疗保险政策和慈善援助项目帮助血友病患儿接受并继续预防治疗方案。限制中国长期常规低剂量预防治疗的是自付费用的比例,而不是医疗保险报销的上限。

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