Patient health care experiences within underrepresented racial and ethnic groups in the United States

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. (c) 2025 American College of Allergy, Asthma & Immunology. Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/)