Craig T, Baptist AP, Anderson J, Vanegas A, Schultz BG, Blair C, Sing K, Juethner S. Perspectives of medical care among patients with hereditary angioedema within underrepresented racial or ethnic groups. Poster presented at the ACAAI 2023 Annual Scientific Meeting; November 12, 2023. Anaheim, CA.

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.

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