ArticleOrphanet journal of rare diseases2014
Socioeconomic burden of hereditary angioedema: results from the hereditary angioedema burden of illness study in Europe.
Article in Orphanet journal of rare diseases, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 58 papers, 3 of them syntheses that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
58 citing papers in PubMed, 3 syntheses or guidelines pooled it, 130 citations in OpenAlex.
- International Guideline on the Diagnosis and Management of Pediatric Patients With Hereditary Angioedema.Allergy · 2026Guideline
- Epidemiology, economic, and humanistic burden of hereditary angioedema: a systematic review.Orphanet journal of rare diseases · 2024Pooled it
- Health-Related Resource-Use Measurement Instruments for Intersectoral Costs and Benefits in the Education and Criminal Justice Sectors.PharmacoEconomics · 2017Pooled it
- Berotralstat and Health-Related Quality of Life in Hereditary Angioedema: Pooled Analysis of the APeX-2 and APeX-J Trials.Clinical and experimental allergy : journal of the British Society for Allergy and Clinical Immunology · 2026Trial
- Impact of lanadelumab on health-related quality of life in patients with hereditary angioedema in the HELP study.Allergy · 2021Trial
- A randomized trial of human C1 inhibitor prophylaxis in children with hereditary angioedema.Pediatric allergy and immunology : official publication of the European Society of Pediatric Allergy and Immunology · 2019Trial
- Preventing Hereditary Angioedema Attacks in Children Using Cinryze®: Interim Efficacy and Safety Phase 3 Findings.International archives of allergy and immunology · 2017Trial
- Long-term prophylactic treatment and related real-world outcomes of patients with hereditary angioedema in Germany: A retrospective analysis of German claims and medical chart data.The World Allergy Organization journal · 2026Article
- Prevalence and impact of sleep disorders in patients with hereditary angioedema: A multicenter cross-sectional study in Latin America.Sleep & breathing = Schlaf & Atmung · 2026Article
- Hereditary angioedema and post traumatic stress disorder: a reciprocal relationship?Orphanet journal of rare diseases · 2026Article
- The 2025 WAO Guidelines for the classification, diagnosis, and treatment of hereditary angioedema, with consideration of worldwide disparities.The World Allergy Organization journal · 2026Article
- Quality of Life and Socioeconomic Situation of Patients with Hereditary Angioedema in Slovakia.Medicina (Kaunas, Lithuania) · 2026Article
- Burden of hereditary angioedema: results from a multinational survey of caregivers for adult and pediatric patients.Orphanet journal of rare diseases · 2026Article
- The International/Canadian hereditary angioedema guideline.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2026Review
- Achieving a normal life in hereditary angioedema: Quality of life and treatment gaps among German HAE patients.Allergologie select · 2026Article
- Status quo and future developments in the diagnosis and treatment of hereditary angioedema.Journal der Deutschen Dermatologischen Gesellschaft = Journal of the German Society of Dermatology : JDDG · 2025Review
- Real-world treatment patterns and burden-of-disease of sub-optimally controlled hereditary angioedema.The World Allergy Organization journal · 2025Article
- Quality of life in patients with hereditary angioedema correlates with angioedema control: Our experience at Chandigarh, India.Asia Pacific allergy · 2025Article
- Analysis of disease burden in patients with hereditary angioedema from Japan by patient-reported outcomes.The Journal of dermatology · 2025Article
- Managing Hereditary Angioedema in a Three-Generation Family: Danazol's Promise in Resource-Limited Settings.Cureus · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 4 institutions in 4 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundHereditary angioedema (HAE) due to C1 inhibitor deficiency is a rare but serious and potentially life-threatening disease marked by spontaneous, recurrent attacks of swelling. The study objective was to characterize direct and indirect resource utilization associated with HAE from the patient perspective in Europe.
methodsThe study was conducted in Spain, Germany, and Denmark to assess the real-world experience of HAE via a cross-sectional survey of HAE patients, including direct and indirect resource utilization during and between attacks for patients and their caregivers over the past 6 months. A regression model examined predictors of medical resource utilization.
resultsOverall, 164 patients had an attack in the past 6 months and were included in the analysis. The most significant predictor of medical resource utilization was the severity of the last attack (OR 2.6; p < 0.001). Among patients who sought medical care during the last attack (23%), more than half utilized the emergency department. The last attack prevented patients from their normal activities an average of 4-12 hours. Patient and caregiver absenteeism increased with attack severity and frequency. Among patients who were working or in school (n = 120), 72 provided work/school absenteeism data, resulting in an estimated 20 days missing from work/school on average per year; 51% (n = 84) indicated that HAE has hindered their career/educational advancement.
conclusionHAE poses a considerable burden on patients and their families in terms of direct medical costs and indirect costs related to lost productivity. This burden is substantial at the time of attacks and in between attacks.
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Registered trials
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