Patient-reported burden of hereditary angioedema: findings from a patient survey in the United States

• DOI: 10.1016/j.anai.2020.02.018
• Publication Date: 2020-03-10T16:44:54Z
• Authors: Aleena Banerji; Kimberly H. Davis; T. Michelle Brown; Kelly Hollis; Shannon M. Hunter; Janet Long; Gagan Jain; Giovanna Devercelli
• Keywords: Hereditary Angioedema

BackgroundHereditary angioedema (HAE) with C1-inhibitor deficiency is associated painful, potentially fatal attacks affecting subcutaneous or submucosal tissues.ObjectiveTo evaluate HAE burden from the patients' perspective.MethodsThis was a noninterventional survey of patients in United States, conducted March 17 to April 28, 2017. Patients were recruited through US Hereditary Angioedema Association. Key eligibility criteria included following: (1) aged 18 years and older, (2) self-reported physician diagnosis type I II, (3) 1 more prodromal symptoms within last year, (4) receipt medication for an attack 2 years. Descriptive analyses conducted.ResultsA total 445 completed survey. Most (92.8%) 64 (78.4%) had positive family history (78.4%). Mean (SD) ages at symptom onset 12.5 (9.1) 20.1 (13.7) years, respectively. (78.7%) experienced past month. The abdomen (58.0%) extremities (46.1%) commonly affected sites; pain (73.9%) abdominal (57.0%) nonabdominal (55.1%) swelling frequently reported symptoms. (68.5%) received currently receiving long-term prophylaxis. (88.8%) visiting allergists immunologists, whereas 9.2% visited emergency departments urgent care clinics. Per Hospital Anxiety Depression Scale, 49.9% 24.0% respondents anxiety depression, Angioedema-Quality Life scores generally lower higher frequency. General health "poor" "fair" 24.8% patients. percentage impairments 5.9% (14.1%) absenteeism, 23.0% (25.8%) presenteeism, 25.4% (28.1%) work productivity loss, 31.8% (29.7%) activity impairment.ConclusionDespite treatment advances, States continue have high illness.