Atrius Health, Harvard Vanguard Medical Associates, Watertown, MA, USA.
Am J Manag Care. 2013 Jun;19(7 Suppl):s119-24.
Hereditary angioedema (HAE) is a genetic syndrome caused by a functional deficit in complement C1 inhibitor that results in recurrent episodes of nonpruritic swelling of the hands, feet, arms, legs, trunk, face, genitalia, bowels, and larynx beginning in childhood or adolescence and continuing throughout the patient's lifetime. Delays in the diagnosis of HAE average several years owing to the rarity of the disorder and the mimicking of clinical symptoms of those of a variety of other diseases. The lives of people with HAE have been transformed in recent years by the approval of several effective new therapies for the treatment and prevention of angioedema attacks. Nonetheless, evidence from surveys shows that many patients still report suboptimal disease control accompanied by significant morbidity, psychological stress, and diminished productivity and quality of life. Further, new HAE agents are costly-the average wholesale price of a single dose of ecallantide (Kalbitor) is $9540-which will further strain an already stressed healthcare system. This article reviews the economic burdens, both direct and indirect, of HAE, and how changes in treatment practices, such as the wider adoption of home-based therapy, may improve patient outcomes and reduce costs.
遗传性血管性水肿(HAE)是一种由补体 C1 抑制剂功能缺陷引起的遗传综合征,导致儿童或青少年时期开始反复发作无瘙痒的手部、足部、手臂、腿部、躯干、面部、生殖器、肠道和喉部肿胀,并持续终生。由于该病的罕见性和多种其他疾病的临床症状相似,HAE 的诊断平均延迟数年。近年来,由于批准了几种治疗和预防血管性水肿发作的有效新疗法,HAE 患者的生活得到了改善。尽管如此,调查证据表明,许多患者仍报告疾病控制不理想,同时伴有显著的发病率、心理压力和生产力及生活质量下降。此外,新型 HAE 药物价格昂贵——单个依库珠单抗(Kalbitor)剂量的平均批发价格为 9540 美元——这将进一步给已经紧张的医疗保健系统带来压力。本文综述了 HAE 的直接和间接经济负担,以及治疗实践的变化(如更广泛地采用家庭治疗)如何改善患者的预后并降低成本。