遗传性血管性水肿：美国少数族裔群体中的患者医疗保健经历

Hereditary angioedema: Patient health care experiences within underrepresented racial and ethnic groups in the United States.

作者信息

Craig Timothy, Baptist Alan P, Anderson John, Zaragoza-Urdaz Rafael H, Burnette Autumn F, Kelbel Theodore E, Riedl Marc A, Vanegas Alejandro, Boyle Kimberly, Bartsch Jennifer L, Darden Christina, Brown T Michelle, Schultz Bob G, Blair Christopher, Sing Krystal, Fox Daniel, Juethner Salomé

机构信息

Allergy, Asthma and Immunology, Departments of Medicine, Pediatrics, and Biomedical Sciences, Director ACARE International Hereditary Angioedema Resource Center, Penn State University, Hershey, Pennsylvania; Vinmec International Hospital, Times City, Hanoi, Vietnam.

Division of Allergy and Clinical Immunology, Henry Ford Health, Detroit, Michigan.

出版信息

Ann Allergy Asthma Immunol. 2025 Apr;134(4):465-473.e3. doi: 10.1016/j.anai.2025.01.007. Epub 2025 Jan 20.

DOI:10.1016/j.anai.2025.01.007

PMID:39842773

Abstract

BACKGROUND

Hereditary angioedema (HAE) is a rare disorder in which unpredictable angioedema attacks significantly affect patient quality of life. Information on patient experiences and perspectives of HAE management within underrepresented racial and ethnic groups is limited.

OBJECTIVE

To gain insight into the experiences and perspectives of medical care and treatment of HAE among underrepresented racial and ethnic groups in the United States.

METHODS

Adult patients diagnosed with having HAE who self-identified as members of an underrepresented racial and/or ethnic group were recruited to participate in a noninterventional, observational, web-based patient survey. The questionnaire included questions on medical history, current and past treatments, resource utilization, and perceived disease severity. The patient-perceived impact of HAE on the quality of life was also measured.

RESULTS

Overall, 139 patients participated in the survey; 33.1% were identified solely as "African American or Black" and 30.2% solely as "Hispanic, Latin American, Latin, or Latine, or Latinx." Before the diagnosis, 12.3% of the patients were satisfied with their HAE-related health care experiences. Many participants experienced difficulties obtaining an HAE diagnosis. Barriers to treatment include insufficient provider knowledge of HAE and misdiagnoses. More than 90% of the patients were satisfied with their care; however, patients reported 6 HAE attacks (median) in the past year and only 10.4% of the patients were attack free. Furthermore, 38.1% found it difficult or very difficult to cover the monthly out-of-pocket costs for HAE-related treatments and 24.6% felt that their provider sometimes/rarely/never considered their individual background when making medical decisions.

CONCLUSION

Barriers to HAE diagnosis and effective treatment persist among US patients from underrepresented racial and ethnic groups.

摘要

背景

遗传性血管性水肿（HAE）是一种罕见疾病，不可预测的血管性水肿发作会严重影响患者的生活质量。关于在代表性不足的种族和族裔群体中患者对HAE管理的体验和看法的信息有限。

目的

深入了解美国代表性不足的种族和族裔群体中HAE患者的医疗护理和治疗体验与看法。

方法

招募自我认定为代表性不足的种族和/或族裔群体成员且被诊断患有HAE的成年患者，参与一项非干预性、观察性的基于网络的患者调查。问卷包括关于病史、当前和过去的治疗、资源利用以及感知疾病严重程度的问题。还测量了患者感知的HAE对生活质量的影响。

结果

总体而言，139名患者参与了调查；33.1%仅被认定为“非裔美国人或黑人”，30.2%仅被认定为“西班牙裔、拉丁裔、拉丁人或拉丁裔或拉丁裔美国人”。在确诊之前，12.3%的患者对其与HAE相关的医疗保健体验感到满意。许多参与者在获得HAE诊断方面遇到困难。治疗障碍包括医疗服务提供者对HAE的知识不足和误诊。超过90%的患者对其护理感到满意；然而，患者报告在过去一年中平均有6次HAE发作，只有10.4%的患者无发作。此外，38.1%的患者发现难以或非常难以支付与HAE相关治疗的每月自付费用，24.6%的患者认为他们的医疗服务提供者在做出医疗决策时有时/很少/从不考虑他们的个人背景。