RATIONALE: Limited data exist on patient-reported outcomes for adults with hereditary angioedema (HAE) within underrepresented ethnic and racial groups.
METHODS: We conducted a web-based survey of patients with HAE from underrepresented ethnic and/or racial groups. Participants were aged ≥18 years, had a self-reported HAE Type I/II diagnosis, were residents of the US/Puerto Rico, and able to complete the survey in English or Spanish.
RESULTS: 139 patients were included in the analysis; 33.1% were ‘African American or Black’, 30.2% ‘Hispanic, Latin American, Latine, or Latinx’, 82.0% female, aged 43.2±13.8 years (mean±SD), and 46.6% with an annual household income <$50,000. Before HAE diagnosis, 6.8±10.9 (mean±SD) physicians/healthcare providers were seen during diagnostic journey, with annual rates of 5.3±10.6 Emergency Department/urgent care (ED/UC) visits, and 2.7±7.7 hospitalizations. After diagnosis, 74.8% of patients received HAE prophylaxis over the past year; 80.0% took their medication all of the time, 15.0% most of the time, and 5.0% some of the time. Since diagnosis and management, patients reported improved symptom control, with 2.6±8.4 (mean±SD) ED/UC visits and 0.4±1.5 hospitalizations over the past year. Most patients (86.5%) reported good/excellent symptom control with their current medication. Over the past year, 6 (2–22) attacks (median [IQR]) were reported; 10.4% of patients were attack free, 16.3% reported 21–50 attacks, and 9.6% >50 attacks. Patients reported 0 (0–3) severe attacks (median [IQR]). 52.5% of patients treated all attacks.
CONCLUSION: Findings suggest control of HAE improved after diagnosis in adults with HAE within underrepresented racial/ethnic groups, but patients continued to experience challenges with disease management.
