INTRODUCTION: US patient perspectives on medical care for hereditary angioedema (HAE) are limited for some underrepresented ethnic and racial groups.
METHODS: A web-based survey of patients with HAE from underrepresented ethnic and/or racial groups was conducted. Eligible participants (excluding patients self-identifying as ‘White only’ ethnicity) had a self-reported diagnosis of HAE Type I/II, were US residents aged ≥18 years able to complete the survey in English or Spanish, and provided informed consent. Descriptive statistics were reported.
RESULTS: This analysis included 139 eligible patients, all from underrepresented ethnic and racial groups (Table). Mean duration between first attack and HAE diagnosis was 8.4 years, most (82.3% [107/130]) had healthcare experiences before diagnosis that negatively affected their lives. The most common factor leading to diagnosis was referral to an HAE specialist (44.1% [60/136]). Once diagnosed, 90.3% (121/134) reported being satisfied/extremely satisfied with their current care, and 94.8% (128/135) were extremely/moderately aware of available treatment options. Following diagnosis, 91.8% (123/134) reported being involved in decisions concerning their current HAE treatment, and 75.4% (101/134) responded that their background/lifestyle/perspectives (e.g., culture/language/religion) were always/very often considered. The most important sources of information about HAE were healthcare providers 35.1% (47/134) and advocacy groups 35.1%; 15.7% (21/134) obtained information from their own research. Additionally, 36.6% (49/134) reported being involved in patient advocacy groups at least every few months.
CONCLUSION: Findings suggest that, following diagnosis, patients with HAE within underrepresented racial and ethnic groups are largely satisfied with their care and are involved in decisions regarding their treatment.
