ReviewThe World Allergy Organization journal2023
A narrative review of recent literature of the quality of life in hereditary angioedema patients.
Review in The World Allergy Organization journal, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers, 2 of them syntheses that pooled it.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
30 citing papers in PubMed, 2 syntheses or guidelines pooled it, 38 citations in OpenAlex.
- Prevalence and Incidence of Hereditary Angioedema: A Systematic Literature Review.International archives of allergy and immunology · 2026Pooled it
- A COSMIN systematic review of instruments for evaluating health-related quality of life in people with Hereditary Angioedema.Health and quality of life outcomes · 2025Pooled it
- Donidalorsen for Long-Term Prophylaxis of Hereditary Angioedema Attacks: Results from the OASISplus Open-Label Extension Cohort at Year 1.Journal of asthma and allergy · 2026Trial
- Patient-Reported Outcomes in the Phase III OASIS-HAE Study of Donidalorsen for Hereditary Angioedema.Allergy · 2025Trial
- Patient Experience with Treatment of HAE Attacks: Results from a Real-World Survey of Physicians and Their Patients.Advances in therapy · 2026Article
- Switching Long-Term Prophylaxis to Donidalorsen for Hereditary Angioedema: 1-Year OASISplus Results.Allergy · 2026Article
- Psychometric validation of the Angioedema Quality of Life Questionnaire (AE-QoL) for hereditary angioedema.Journal of patient-reported outcomes · 2026Article
- Patient Preferences for Long-Term Prophylactic Treatment in Hereditary Angioedema: A Discrete-Choice Experiment.The patient · 2026Article
- Workplace and Healthcare Stigma in Hereditary Angioedema: Links to Anxiety and Functional Impairment.Healthcare (Basel, Switzerland) · 2026Article
- Is hereditary angioedema associated with deficits in emotion regulation? A quantitative study in adult patients.Orphanet journal of rare diseases · 2026Article
- The patient experience of hereditary angioedema: findings from a racially diverse sample of adult patients.Orphanet journal of rare diseases · 2026Article
- A Comprehensive Assessment of Health-Related Quality of Life in Hereditary Angioedema as a Patient-Centered Approach.International archives of allergy and immunology · 2026Article
- Physiological evaluation of the emotional regulation of patients with hereditary angioedema.BioPsychoSocial medicine · 2026Article
- Ecological momentary assessment to uncover affect dynamics in patients with hereditary angioedema: a complementary tool for enhancing quality of life evaluation.Frontiers in psychology · 2026Article
- Association Between the Angioedema Control Test and Attack Frequency in Hereditary Angioedema.Clinical and translational allergy · 2026Article
- Frailty in elderly with a rare genetic disease: a geriatric score analysis in C1 inhibitor Hereditary Angioedema.Frontiers in medicine · 2026Article
- Achieving a normal life in hereditary angioedema: Quality of life and treatment gaps among German HAE patients.Allergologie select · 2026Article
- Behavioural withdrawal during an acute stress test as a marker of psychobiological vulnerability in hereditary angioedema.Frontiers in immunology · 2026Article
- Long-Term Real-World Outcomes in Patients with Hereditary Angioedema Receiving Lanadelumab for 3 or More Years.International archives of allergy and immunology · 2026Article
- Health-related quality of life in hereditary angioedema patients treated with subcutaneous C1 inhibitor (C1-INH) therapy in Canada.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Hereditary angioedema (HAE) is a rare disorder that causes unpredictable and debilitating cutaneous and submucosal edema and can lead to death. HAE can impair patients' ability to perform daily activities, proportional to pain severity, with patients reporting lower productivity, missed time from work or school and potentially resulting in missed career and educational opportunities. Many patients with HAE experience a significant psychological burden, including anxiety and depression. Available treatment aims to prevent and/or treat HAE attacks as they occur, to reduce morbidity and mortality and, finally, to improve health-related quality of life. Two different validated specific angioedema instruments are available to assess patients' quality of life. The Angioedema Quality of Life Questionnaire (AE-QoL) examines diagnosed patients' quality of life but is not specific for HAE. The disease-specific questionnaire is the Hereditary Angioedema Quality of Life (HAE-QoL), and the first used for hereditary angioedema with C1 inhibitors (C1-INH) deficiency. These quality-of-life instruments are helpful to the HAE patients' assessment and to the development of better therapeutic strategies as clinical tools, as defined by international guidelines. Considering this context, this review was conducted to compare the effects of acute vs. long-term prophylaxis on HAE patients' health-related quality of life. In addition, the prevalence of anxiety and depression among these individuals was also reviewed.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.