BACKGROUND: Hereditary angioedema (HAE) is a rare disorder in which unpredictable angioedema attacks significantly impact patient quality of life (QoL). There is limited information regarding patient experiences and perspectives of HAE management within underrepresented racial and ethnic groups.
OBJECTIVE: To gain insight into the experiences and perspectives of medical care and treatment for HAE within underrepresented racial and ethnic groups in the US.
METHODS: Adult patients with an HAE diagnosis who self-identified as a member of an underrepresented racial and/or ethnic group were recruited to participate in a non-interventional observational, web-based patient survey. Questions included medical history, current and past treatments, resource utilization, and perceived disease severity. Patient-perceived impact of HAE on QoL was also measured.
RESULTS: Overall, 139 patients participated in the survey; 33.1% identified solely as “African American or Black” and 30.2% solely as “Hispanic, Latin American, Latine, or Latinx”. Before diagnosis, 12.3% of patients were satisfied with their HAE-related healthcare experiences. Many participants experienced difficulties obtaining an HAE diagnosis. Barriers to treatment included insufficient provider knowledge of HAE and misdiagnoses. More than 90% of patients were satisfied with their care; however, patients reported 6 HAE attacks (median) over the past year and only 10.4% of patients were attack free. Additionally, 38.1% found it difficult/very difficult to cover 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.
