ArticleJournal of drug assessment2021
Hereditary angioedema patients would prefer newer-generation oral prophylaxis.
Article in Journal of drug assessment, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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
16 citing papers in PubMed, 26 citations in OpenAlex.
- Comparative Efficacy of Recombinant C1 Inhibitor Versus Sebetralstat for On-Demand Treatment of Hereditary Angioedema Attacks: A Matching-Adjusted Indirect Treatment Comparison.Advances in therapy · 2026Trial
- Patient Experience with Treatment of HAE Attacks: Results from a Real-World Survey of Physicians and Their Patients.Advances in therapy · 2026Article
- Berotralstat Tolerability and Effectiveness in Hereditary Angioedema: Berolife Study Results.Clinical and translational allergy · 2026Article
- Optimizing conversations on treatment management in hereditary angioedema: healthcare professional and patient perspectives on long-term prophylaxis and shared decision-making.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2026Article
- Patient Preferences for Long-Term Prophylactic Treatment in Hereditary Angioedema: A Discrete-Choice Experiment.The patient · 2026Article
- Global frequency, diagnosis, and treatment of hereditary angioedema with normal C1 inhibitor.The journal of allergy and clinical immunology. Global · 2025Article
- 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
- Advent of oral medications for the treatment of hereditary angioedema.Clinical and translational allergy · 2024Review
- Androgen transition and management of hereditary angioedema long-term prophylaxis in real life: a single-center case series.Orphanet journal of rare diseases · 2024Article
- Hereditary angioedema prevalence and satisfaction with prophylaxis in South Australia.The World Allergy Organization journal · 2024Article
- Berotralstat for long-term prophylaxis of hereditary angioedema in Japan: Parts 2 and 3 of the randomized APeX-J Phase III trial.The World Allergy Organization journal · 2024Article
- The multifactorial impact of receiving a hereditary angioedema diagnosis.The World Allergy Organization journal · 2023Review
- Current challenges and future opportunities in patient-focused management of hereditary angioedema: A narrative review.Clinical and translational allergy · 2023Review
- Managing Diagnosis, Treatment, and Burden of Disease in Hereditary Angioedema Patients with Normal C1-Esterase Inhibitor.Journal of asthma and allergy · 2023Review
- Quantifying the Value of Introducing an Oral Drug Delivery Option for Edaravone: A Review of Analyses Evaluating the Economic Impact of Oral versus Intravenous Formulations.ClinicoEconomics and outcomes research : CEOR · 2022Review
- Patient and caregiver perspectives on transitioning to oral prophylaxis in the emerging hereditary angioedema treatment landscape.Clinical case reports · 2021Article
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo explore treatment preferences of patients with Hereditary Angioedema (HAE), a debilitating disorder characterized by potentially life-threatening, recurrent episodes of swelling, resulting in significant physical, emotional, and economic burden. With newer oral prophylactic treatments on the horizon, it is important to understand patients' preferences.
methodsAn online survey was conducted in 2018 among United States (US) adult patients diagnosed with Type I or II HAE. Respondents were recruited anonymously from online panels and social media.
resultsOnline surveys were completed by 75 patients diagnosed with HAE by a healthcare provider, with a mean of 16.7 years since diagnosis. Most patients (64%) report taking at least one medication for prophylaxis of HAE attacks. While almost all patients surveyed agree it is important to take preventative medication as prescribed, over half (52%) of patients report HAE prophylactic treatment to be burdensome. Despite stating that they like their current medications, 98% of the prophylactic HAE medication users would prefer an oral treatment if available; almost all (96%) prophylaxis users agree that oral preventative medication would fit their life better than an injectable medication, with 67% of users citing convenience as the primary reason to try an oral preventative HAE medication. If a more convenient option were available, nearly all (96%) patients currently not treating their HAE prophylactically would feel encouraged to do so.
conclusionsMost patients with HAE would prefer a newer generation oral prophylactic medication that would decrease treatment burden and allow them to live fuller lives.
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