Overview of Patients with Hemophilia in China: Demographics, Diseases, Treatment, and Health Status

References

• Srivastava A, Brewer AK, Mauser-Bunschoten EP, Hemophilia TGWG. Guidelines for the management of hemophilia. Haemophilia. 2013;19:e1–47. doi:10.1111/j.1365-2516.2012.02909.x
   PubMed Web of Science ®Google Scholar
• World Federation of Hemophilia. Report on the Annual Global Survey 2020; 2021.
   Google Scholar
• Oldenburg J. Optimal treatment strategies for hemophilia: achievements and limitations of current prophylactic regimens. Blood. 2015;125(13):23–27. doi:10.1182/blood-2015-01-528414
   Web of Science ®Google Scholar
• Yang R, Poon MC, Luke KH, Zhao Y, Wu J. Building a network for hemophilia care in China: 15 years of achievement for the hemophilia treatment center collaborative network of China. Blood Adv. 2019;3(Supplement 1):34–37. doi:10.1182/bloodadvances.2019GS121524
   PubMedGoogle Scholar
• Chinese Society of Hematology Thrombus and Hemostasis Group, Chinese Hemophilia Cooperative Group. Chinese guidelines on the treatment of hemophilia (version 2020). Chin J Hematol. 2020;41:265–271. doi:10.3760/cma.j.issn.0253-2727.2020.04.001
   Google Scholar
• Health Commission In China MOSA. The national rare disease in China; 2018.
   Google Scholar
• Chen W, Zhang L. Reimbursement landscape and policy development for rare diseases in China: a case study of hemophilia. Value Health. 2013;16(3):A207–8. doi:10.1016/j.jval.2013.03.1049
   Web of Science ®Google Scholar
• Poon MC, Luke KH. Haemophilia care in China: achievements of a decade of world federation of hemophilia treatment centre twinning activities. Haemophilia. 2008;14(5):879–888. doi:10.1111/j.1365-2516.2008.01821.x
   PubMed Web of Science ®Google Scholar
• Huang SH, Li ZT, Liu Y, et al. Comparison of short-term tertiary prophylaxis at low-dose and intermediate-dose for adults with severe hemophilia a in China. Blood. 2015;126:23.
   Google Scholar
• Zhao H, Yang L, Long C, et al. Hemophilia care in China: review of care for 417 hemophilia patients from 11 treatment centers in Shanxi Province. Expert Rev Hematol. 2015;8:543–550. doi:10.1586/17474086.2015.1043263
   PubMed Web of Science ®Google Scholar
• Hua B, Yan Z, Zhu T, Wang S, Zhao Y. The frequency of factor VIII inhibitors in hemophilia A patients in China: a single-center experience over seven years. Haemophilia. 2008;14:50–51. doi:10.1111/j.1365-2516.2007.01560.x
   PubMedGoogle Scholar
• Fang Y, Zhang X, Li A, Zhang X, Teng B. Hemophilia patient databases at the Shandong Hemophilia Centre of China. Haemophilia. 2014;20:36. doi:10.1111/hae.12423
   PubMed Web of Science ®Google Scholar
• Dou XQ, Poon MC, Yang RC. Haemophilia care in China: achievements in the past decade. Haemophilia. 2020;26(5):759–767. doi:10.1111/hae.14101
   PubMed Web of Science ®Google Scholar
• Zhou T, Guan H, Liu GG, Ma A. Health-related quality of life for disease population in China based on EQ-5D: a systematic review. Chinese J Evidence-Based Med. 2016;16(2):135–142. doi:10.1186/s13020-021-00543-x
   Google Scholar
• Zhang H, Huang J, Kong X, Ma G, Fang Y. Health-related quality of life in children with haemophilia in China: a 4-year follow-up prospective cohort study. Health Qual Life Outcomes. 2019;17(4):23–29. doi:10.1186/s12955-019-1083-3
   PubMedGoogle Scholar
• Wu R, Sun J, Xiao J, et al. A prospective study of health-related quality of life of boys with severe haemophilia A in China: comparing on-demand to prophylaxis treatment. Haemophilia. 2017;23(3):430–436. doi:10.1111/hae.13198
   PubMed Web of Science ®Google Scholar
• Haque Q, Feng X, Li C. Assessment of intracranial hemorrhage demographics in children with hemophilia: a multicentre study in China. Blood. 2016;128(22):4981. doi:10.1182/blood.V128.22.4981.4981
   Web of Science ®Google Scholar
• Xue F, Yang R. Update on the national hemophilia registry of China. Haemophilia. 2014;20:33.
   Web of Science ®Google Scholar
• Sun J, Zhao Y, Yang R, et al. The demographics, treatment characteristics and quality of life of adult people with haemophilia in China – results from the HERO study. Haemophilia. 2017;23(1):89–97. doi:10.1111/hae.13071
   PubMed Web of Science ®Google Scholar
• Song X, Zhong J, Xue F, Chen L, Yang R. An overview of patients with haemophilia A in China: epidemiology, disease severity and treatment strategies. Haemophilia. 2020;2020:1.
   Google Scholar
• Luo N, Liu G, Li M, et al. Estimating an EQ-5D-5L Value Set for China. Value Health. 2017;20(4):662–669. doi:10.1016/j.jval.2016.11.016
   PubMed Web of Science ®Google Scholar
• Mahlangu JN. Haemophilia care in South Africa: 2004–2007 look back. Haemophilia. 2009;15(1):135–141. doi:10.1111/j.1365-2516.2008.01807.x
   PubMed Web of Science ®Google Scholar
• Lorenzato CS, Santos RB, Fagundes GZZ, Ozelo MC. Haemophilia Experiences, Results and Opportunities (HERO study) in Brazil: assessment of the psychosocial effects of haemophilia in patients and caregivers. Haemophilia. 2019;25:640–650. doi:10.1111/hae.13774
   PubMed Web of Science ®Google Scholar
• Curtis R, Baker J, Riske B, et al. Young adults with hemophilia in the U.S.: demographics, comorbidities, and health status. Am J Hematol. 2015;90:S11–S16. doi:10.1002/ajh.24218
   PubMed Web of Science ®Google Scholar
• Jain A, Mehta S, Joshi M, et al. Patient reported outcomes to assess quality of hemophilia care in north India - results of a global partnership. Blood. 2016;128:22.
   Web of Science ®Google Scholar
• Witkop M, Guelcher C, Forsyth A, et al. Treatment outcomes, quality of life, and impact of hemophilia on young adults (aged 18–30 years) with hemophilia. Am J Hematol. 2015;90:S3–S10. doi:10.1002/ajh.24220
   PubMed Web of Science ®Google Scholar
• Qu Y, Zhan S, Dong P. The prevalence and treatment status of hemophilia in India, Russia, Taiwan and Turkey: a systematic review and meta analysis. Value Health. 2012;15(7):A679–A679. doi:10.1016/j.jval.2012.08.456
   Web of Science ®Google Scholar
• Zhang L, Zhang P, Chen W. Treatment regimens, patient reported outcomes and health-related quality of life in children with moderate and severe hemophilia A in China: using real-world data. Orphanet J Rare Dis. 2023;18(1). doi:10.1186/s13023-023-02835-x
   Web of Science ®Google Scholar
• Krasnova L, Vorobiev P, Vorobiev A. Epidemiology of hemophilia in Russia for 2007–2017: results of standardization use in therapy. Value Health. 2019;22:S342–S342. doi:10.1016/j.jval.2019.04.1670
   Web of Science ®Google Scholar
• McLaughlin P, Hurley M, Chowdary P, Stephensen D, Khair K. How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? A qualitative study. Disabil Rehabil. 2022;44(26):8412–8419. doi:10.1080/09638288.2021.2018053
   PubMed Web of Science ®Google Scholar
• Krasnova L, Vorobiev P, Vorobiev A, Holownia M. Economics and quality of life of patients with hemophilia in Russia for 2007–2017: results of standardization use in therapy. Value Health. 2019;22:S341–S341. doi:10.1016/j.jval.2019.04.1667
   Web of Science ®Google Scholar