Treatment Status and Economic Burden of People with Hemophilia in Mainland China: A Systematic Review_Chinese Journal of Evidence-Based Medicine

Authors：

QU YanJi ¹ , YIN Huan ¹ , PANG Yuanjie ² , NIE Xiaolu ¹ , DONG Peng ³ ,  ZHAN Siyan ¹

1. Department of Epidemiology and Biostatistics, School of Public Health, Peking University, Beijing 100191, China;2. Department of Preventive Medicine, School of Public Health, Peking University, Beijing 100191, China;3. Pfizer in China, Beijing 100010, China;

Corresponding author：

ZHAN Siyan, Email: siyan-zhan@bjmu.edu.cn

Keywords：

Hemophilia; On-demand therapy; Prophylactic therapy; Comprehensive care; Systematic review

DOI：

10.7507/1672-2531.20130032

Video：

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Objective 　To be aware of the treatment status and economic burden of people with hemophilia (PWH) in mainland China, so as to seek the optimal therapy for them.
Methods 　The relevant Chinese and English databases such as CBM, CNKI, VIP, WanFang Database, PubMed, EMbase and The Cochrane Library (Issue 6 of 12, June 2011) were searched in June, 2011. The economic analyses and studies on PWH treatment and economic burden published from 1980 to 2011 were collected.
Results 　The diagnosis and treatment of PWH in mainland China lagged behind. More than 30% of PWH did not receive or occasionally received treatment, and less than 10% received prophylactic therapy. Lots of PWHs still used FFP or cryoglobulin which were easily to cause blood-borne viral diseases. More than half of PWH families could afford a little or completely could not afford the therapy. Low dose prophylactic therapy was cost-efficient than on-demand therapy. Based on the therapy status, it was estimated that approximately RMB 53 844 yuan per year per patient should be put into practice in order to have PWH received low-dose prophylactic therapy, and to prevent 80% of bleeding.
Conclusion 　PWH in mainland China is poor in treatment status and heavy in economic burden, so it is an optimal way to adopt comprehensive care model and low-dose prophylactic therapy in mainland China.

Citation： QU YanJi,YIN Huan,PANG Yuanjie,NIE Xiaolu,DONG Peng,ZHAN Siyan. Treatment Status and Economic Burden of People with Hemophilia in Mainland China: A Systematic Review. Chinese Journal of Evidence-Based Medicine, 2013, 13(2): 182-189. doi: 10.7507/1672-2531.20130032 Copy

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2.	Smith PS, Levine PH. The benefits of comprehensive care of hemophilia: A five-year study of outcome. American Journal of Public Health, 1984, 74(6): 616-617.
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4.	Drummond MF, Jefferson T. Guidelines for authors and peer reviewers of economic submissions to the BMJ. BMJ, 1996, 313(7052): 275-283.
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7.	胡超英, 胡耀文. 母体全脾移植治疗重型血友病甲的观察及护理. 护理学杂志, 1993, (1): 3-4.
8.	姜洪池, 朱安龙, 许军, 等. 活体供脾脾脏移植治疗血友病甲5例. 中华肝胆外科杂志, 2001, 7(8): 475-477.
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12.	王翠琴, 付雪玲, 丁丽莎. 46例血友病A家庭治疗的经验. 中华医学实践杂志, 2005, 4(10): 1067.
13.	钟小红. 血友病儿童低剂量替代治疗综合关怀模式研究. 广州: 第一军医大学, 2007.
14.	范永前, 冯建民, 杨庆铭, 等. 全膝关节置换术治疗血友病膝关节病. 中华骨科杂志, 2007, 27(10): 731-735.
15.	吴润晖, 吴心怡, 冯涛, 等. 儿童血友病病人临床资料及现状分析. 血栓与止血学, 2008, 14(3): 116-120.
16.	李文卿. 重组人凝血因子Ⅷ在中国血友病A患者的有效性及抑制物产生的追踪观察. 广州:南方医科大学, 2008.
17.	李敏. 血友病A儿童短期低剂量预防治疗的观察. 广州: 南方医科大学, 2009.
18.	李进凤, 曾旋辉, 黄琴, 等. 广东血友病患者医疗保险现状调查. 卫生经济研究, 2010, (12): 37-39.
19.	钟小红, 周春兰, 周宏珍, 等. 血友病患者诊疗及健康状况调查分析. 护理学杂志, 2010, 25(11): 23-26.
20.	Wu R, Luke K H, Poon M C, et al. Low dose secondary prophylaxis reduces joint bleeding in severe and moderate haemophilic children: A pilot study in China. Haemophilia, 2011, 17: 70-74.
21.	Wu RH, Wu XY, Zhang NN, et al. Evaluation clinical data and current condition of children hemophilic patients in China. Chinese Journal of Thrombosis and Hemostasis, 2008, 14(3): 116-120.
22.	丁秋兰, 王学锋, 王鸿利, 等. 血友病诊断和治疗的专家共识. 临床血液学杂志, 2010, 23(1): 49-53.
23.	Globe DR, Curtis RG, Koerper MA, et al. Utilization of care in haemophilia: a resource-based method for cost analysis from the Haemophilia Utilization Group Study (HUGS). Haemophilia, 2004, 10(s1): 63-70.
24.	Kar A, Potnis Lele M. Descriptive epidemiology of haemophilia in Maharashtra, India. Haemophilia, 2001, 7(6): 561-567.
25.	Soucie JM, Symons JIV, Evantt B, et al. Home-based factor infusion therapy and hospitalization for bleeding complication among males with hemophilia. Haemophilia, 2001, 7(2): 198-200.
26.	Khoriaty R, Taher A, Inati A, et al. A comparison between prophylaxis and on demand treatment for severe haemophilia. Clinical & Laboratory Haematology, 2005, 27: 320-323.
27.	Liou WS, Tu TC, Cheng SN, et al. Secondary prophylaxis treatment versus on-demand treatment for patients with severe haemophilia A: Comparisons of cost and outcomes in Taiwan. Haemophilia, 2011, 17(1): 45-54.

1. 张媛, 杨林花. 血友病治疗研究进展. 血栓与止血学, 2006, 12(6): 279-281.
2. Smith PS, Levine PH. The benefits of comprehensive care of hemophilia: A five-year study of outcome. American Journal of Public Health, 1984, 74(6): 616-617.
3. 余运西. 七成血友病患者得不到正确诊断. Available from: http://www.xueyou.org/china/xinwen/xy/ 201107/363.shtml.
4. Drummond MF, Jefferson T. Guidelines for authors and peer reviewers of economic submissions to the BMJ. BMJ, 1996, 313(7052): 275-283.
5. 孙汉英, 徐惠珍, 杨世海. 汉口地区血友病调查报告. 华中科技大学学报(医学版). 1989, (S2): 139-141.
6. 郭瑞祥, 张云禾. 冷沉淀治疗甲型血友病1例. 重庆医学, 1989, 18(1): 64.
7. 胡超英, 胡耀文. 母体全脾移植治疗重型血友病甲的观察及护理. 护理学杂志, 1993, (1): 3-4.
8. 姜洪池, 朱安龙, 许军, 等. 活体供脾脾脏移植治疗血友病甲5例. 中华肝胆外科杂志, 2001, 7(8): 475-477.
9. 张雪芹, 王勤友, 丁培芳, 等. 302例血友病甲因子Ⅷ用量的统计分析. 中国输血杂志, 2001, 14(2): 81.
10. 徐瑞焱. <’32>P胶体滑膜切除术治疗慢性血友病滑膜炎. 北京: 中国协和医科大学, 2003.
11. Wang T, Zhang L, Li H. Assessing health-related quality-of-life in individuals with haemophilia in China. Haemophilia, 2004, 10(4): 370-375.
12. 王翠琴, 付雪玲, 丁丽莎. 46例血友病A家庭治疗的经验. 中华医学实践杂志, 2005, 4(10): 1067.
13. 钟小红. 血友病儿童低剂量替代治疗综合关怀模式研究. 广州: 第一军医大学, 2007.
14. 范永前, 冯建民, 杨庆铭, 等. 全膝关节置换术治疗血友病膝关节病. 中华骨科杂志, 2007, 27(10): 731-735.
15. 吴润晖, 吴心怡, 冯涛, 等. 儿童血友病病人临床资料及现状分析. 血栓与止血学, 2008, 14(3): 116-120.
16. 李文卿. 重组人凝血因子Ⅷ在中国血友病A患者的有效性及抑制物产生的追踪观察. 广州:南方医科大学, 2008.
17. 李敏. 血友病A儿童短期低剂量预防治疗的观察. 广州: 南方医科大学, 2009.
18. 李进凤, 曾旋辉, 黄琴, 等. 广东血友病患者医疗保险现状调查. 卫生经济研究, 2010, (12): 37-39.
19. 钟小红, 周春兰, 周宏珍, 等. 血友病患者诊疗及健康状况调查分析. 护理学杂志, 2010, 25(11): 23-26.
20. Wu R, Luke K H, Poon M C, et al. Low dose secondary prophylaxis reduces joint bleeding in severe and moderate haemophilic children: A pilot study in China. Haemophilia, 2011, 17: 70-74.
21. Wu RH, Wu XY, Zhang NN, et al. Evaluation clinical data and current condition of children hemophilic patients in China. Chinese Journal of Thrombosis and Hemostasis, 2008, 14(3): 116-120.
22. 丁秋兰, 王学锋, 王鸿利, 等. 血友病诊断和治疗的专家共识. 临床血液学杂志, 2010, 23(1): 49-53.
23. Globe DR, Curtis RG, Koerper MA, et al. Utilization of care in haemophilia: a resource-based method for cost analysis from the Haemophilia Utilization Group Study (HUGS). Haemophilia, 2004, 10(s1): 63-70.
24. Kar A, Potnis Lele M. Descriptive epidemiology of haemophilia in Maharashtra, India. Haemophilia, 2001, 7(6): 561-567.
25. Soucie JM, Symons JIV, Evantt B, et al. Home-based factor infusion therapy and hospitalization for bleeding complication among males with hemophilia. Haemophilia, 2001, 7(2): 198-200.
26. Khoriaty R, Taher A, Inati A, et al. A comparison between prophylaxis and on demand treatment for severe haemophilia. Clinical & Laboratory Haematology, 2005, 27: 320-323.
27. Liou WS, Tu TC, Cheng SN, et al. Secondary prophylaxis treatment versus on-demand treatment for patients with severe haemophilia A: Comparisons of cost and outcomes in Taiwan. Haemophilia, 2011, 17(1): 45-54.

Chinese Journal of Evidence-Based Medicine

Treatment Status and Economic Burden of People with Hemophilia in Mainland China: A Systematic Review

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