ArticleAllergy and asthma proceedings2018
Hereditary angioedema from the patient's perspective: A follow-up patient survey.
Article in Allergy and asthma proceedings, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers.
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Who cites it
21 citing papers in PubMed.
- Patient Preferences for Long-Term Prophylactic Treatment in Hereditary Angioedema: A Discrete-Choice Experiment.The patient · 2026Article
- Exercise-Induced Angioedema, Urticaria, and Anaphylaxis-A Narrative Review.Sports (Basel, Switzerland) · 2025Review
- Reductions in medical visits and hospitalizations following berotralstat initiation in patients with hereditary angioedema in the United States.Journal of managed care & specialty pharmacy · 2025Article
- The origin of YouTube videos on hereditary angioedema matters.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2025Article
- Hereditary angioedema in children: Review and practical perspective for clinical management.Pediatric allergy and immunology : official publication of the European Society of Pediatric Allergy and Immunology · 2024Review
- Unmet needs in the management of hereditary angioedema from the perspective of Brazilian patients.The World Allergy Organization journal · 2024Article
- Hereditary Angioedema: Impact of COVID-19 pandemic stress upon disease related morbidity and well-being.Allergy and asthma proceedings · 2023Article
- Pregnancy in women with Hereditary Angioedema due to C1-inhibitor deficiency: Results from the ITACA cohort study on outcome of mothers and children withFrontiers in medicine · 2022Article
- Leveraging unstructured data to identify hereditary angioedema patients in electronic medical records.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2021Article
- Assessment and management of disease burden and quality of life in patients with hereditary angioedema: a consensus report.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2021Review
- Assessing the cost and quality-of-life impact of on-demand-only medications for adults with hereditary angioedema.Allergy and asthma proceedings · 2021Article
- Hereditary angioedema patients would prefer newer-generation oral prophylaxis.Journal of drug assessment · 2021Article
- How do patients and physicians communicate about hereditary angioedema in the United States?PloS one · 2021Article
- The continuing "1000 faces of asthma".Allergy and asthma proceedings · 2020Article
- Peanuta non grata revisited.Allergy and asthma proceedings · 2019Article
- Advances in drug allergy, urticaria, angioedema, and anaphylaxis in 2018.The Journal of allergy and clinical immunology · 2019Review
- Article
- Innate lymphoid cells: A new family of lymphocytes with involvement from worms to allergic disease.Allergy and asthma proceedings · 2019Article
- Genetics, epigenetics, and allergic disease: A gun loaded by genetics and a trigger pulled by epigenetics.Allergy and asthma proceedings · 2019Article
- Inflammation and allergic disease: An irrefutable combination.Allergy and asthma proceedings · 2019Article
Corrections and comments
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Authors and funding
14 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundWe conducted our first patient survey at the 2013 hereditary angioedema (HAE) patient summit and learned that, despite several novel therapies, the burden of disease was high.
objectiveTo determine, from the patient's perspective, if any improvements in the current state of HAE care occurred over a two-year period between HAE patient summits.
methodsA patient survey was conducted at the 2015 Hereditary Angioedema Association conference by using paper surveys that aimed at understanding the current state of HAE care. Questions included patient characteristics, burden of disease, and satisfaction with care and treatment options. Comparisons between patients with HAE with C1-inhibitor (HAE-C1INH) and patients with HAE with normal C1-inhibitor (HAE-nlC1INH), as well as between patients with HAE in 2013 and 2015, were performed by using χ2 tests.
resultsThere were 232 surveys distributed, and 143 surveys were identified as complete for inclusion and analysis from patients with self-reported HAE. Most patients had type I or type II HAE (67.5% [n = 106]), with a smaller number of patients with HAE-nlC1INH (23.6% [n = 37]). In 2015, almost half of the patients with HAE-C1INH (47.1%) and 56.7% of the patients with HAE-nlC1INH experienced a delay of ≥10 years between initial symptoms and diagnosis. Among the patients with HAE-C1INH, 25% reported one or more attacks per week and another 48% reported experiencing one or more attacks per month (fewer than one attack per week). The patients with HAE-nlC1INH reported attacks more frequently than did the patients with HAE-C1INH (p = 0.002), with 59.5% who reported attacks at least once a week. Emergency care was reported one or more times per month in 5% of the patients with HAE-C1INH and in 24.3% of the patients with HAE-nlC1INH.
conclusionSimilar to 2013, although significant progress has been made, there is still a high burden of disease that faces patients with HAE.
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