NATSEM, Institute for Governance and Policy Analysis, University of Canberra, Canberra, ACT, Australia.
Roche Products Pty Limited, Sydney, NSW, Australia.
Haemophilia. 2020 Aug;26 Suppl 5:3-10. doi: 10.1111/hae.14102.
Few studies, both in Australia and overseas, have examined the social impacts of living with haemophilia A (HA) or the economic costs associated with the disorder. The purpose of this paper is to examine the epidemiology and societal burden of people with HA (PwHA) in Australia, with a particular focus on men with this disorder.
The epidemiology and societal burden of HA in Australia, with a particular focus on men with this disorder, were assessed, using data available in the Australian and international literature and publicly available data.
The mean annual prevalence of HA is approximately 1-2 per 10 000 males. Prophylactic treatment is used in one-quarter (25.1%) of people with moderate HA, and 82.2% of people with severe HA. Within the latter group, 16.1% have inhibitors for Factor VIII, predisposing them to worse morbidity, mortality and quality of life when compared to the non-inhibitor population. Joint pain and joint disease occur commonly in PwHA, with up to 70% of adults with HA experiencing joint problems. HA is associated with poor physical health, and PwHA miss school and work due to bleeding-related events.
HA is associated with substantial economic burden; with large differences in costs reported between countries. Overall, HA imposes a significant burden of disease on PwHA, their families and the community at large.
在澳大利亚和海外,很少有研究探讨血友病 A(HA)患者的社会影响或与该疾病相关的经济成本。本文旨在研究澳大利亚 HA 患者(PwHA)的流行病学和社会负担,特别关注患有这种疾病的男性。
使用澳大利亚和国际文献中的现有数据以及公开可用的数据,评估了澳大利亚 HA 的流行病学和社会负担,特别关注患有这种疾病的男性。
HA 的年平均患病率约为每 10000 名男性中有 1-2 名。四分之一(25.1%)中度 HA 患者和 82.2%重度 HA 患者接受预防性治疗。在后一组中,16.1%的人有针对凝血因子 VIII 的抑制剂,这使他们在发病率、死亡率和生活质量方面比非抑制剂人群更差。关节疼痛和关节疾病在 PwHA 中很常见,多达 70%的 HA 成年人有关节问题。HA 与身体健康状况不佳有关,PwHA 因出血相关事件而缺课和旷工。
HA 与巨大的经济负担相关;不同国家报告的成本存在较大差异。总体而言,HA 给 PwHA、他们的家庭和整个社区带来了巨大的疾病负担。