Evidence map›Paper›PMID 41781192›Full record

ArticleClinical and translational allergy2026

An International Delphi Study on Barriers to On-Demand Treatment of Hereditary Angioedema Attacks.

Aleena Banerji, Emel Aygören-Pürsün, Noemi-Anna Bara, Jonathan A Bernstein, Stephen Betschel, Laurence Bouillet, Paula J Busse, Teresa Caballero, Mauro Cancian, Danny M Cohn and 11 more

Abstract read
In one paragraph

Article in Clinical and translational allergy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

21 authors.

Aleena BanerjiDivision of Rheumatology, Allergy and Immunology, Massachusetts General Hospital, Boston, Massachusetts, USA.
Emel Aygören-PürsünUniversitätsklinikum Frankfurt, Frankfurt, Germany.
Noemi-Anna BaraRomanian Hereditary Angioedema Expertise Centre, Centrul Clinic Mediquest, Sangeorgiu de Mures, Romania.
Jonathan A BernsteinDepartment of Internal Medicine, Division of Rheumatology, Allergy and Immunology, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.ORCID https://orcid.org/0000-0002-3476-1196
Stephen BetschelDepartment of Medicine, St. Michael's Hospital, University of Toronto, Toronto, Ontario, Canada.
Laurence BouilletInternal Medicine Department, National Reference Center of Angioedema CREAK, Grenoble University Hospital, Grenoble, France.
Paula J BusseDivision of Allergy and Clinical Immunology, Icahn School of Medicine at Mount Sinai New York, New York, New York, USA.
Teresa CaballeroDepartment of Allergy, La Paz University Hospital, Hospital La Paz Institute for Health Research (IdiPAZ-Group 44), Biomedical Research Network on Rare Diseases (CIBERER U754), Madrid, Spain.
Mauro CancianDepartmental Unit of Allergology, University Hospital of Padua, Padua, Italy.
Danny M CohnDepartment of Vascular Medicine, Amsterdam Cardiovascular Sciences, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands.ORCID https://orcid.org/0000-0002-9036-3723
Timothy CraigDepartment of Medicine, Pediatrics, MFM and BioMedical Sciences, Penn State University, Hershey, Pennsylvania, USA.ORCID https://orcid.org/0000-0002-7774-4855
Henriette FarkasHungarian Angioedema Center of Reference and Excellence, Department of Internal Medicine and Haematology, Semmelweis University, Budapest, Hungary.
Anete Sevciovic GrumachClinical Immunology, Centro Universitário Faculdade de Medicina do ABC (CEUFMABC), Santo André, São Paulo, Brazil.
Michihiro HideDepartment of Dermatology, Hiroshima City Hiroshima Citizens Hospital Hiroshima, Hiroshima, Japan.
Sorena Kiani-AlikhanDepartment of Immunology, Royal Free London NHS Foundation Trust, London, UK.
Hilary J LonghurstDepartment of Medicine, University of Auckland and Department of Immunology, Auckland City Hospital, Auckland, New Zealand.
William R LumryAARA Research Center, Dallas, Texas, USA.
Marc A RiedlDivision of Allergy and Immunology, University of California, San Diego, California, USA.
Marcin StobieckiDepartment of Clinical and Environmental Allergology, Jagiellonian University Medical College, Krakow, Poland.ORCID https://orcid.org/0000-0003-0161-4920
Anna ValerievaDepartment of Allergology, Medical University of Sofia, Clinic of Allergology, University Hospital, Sofia, Bulgaria.
Andrea ZanichelliDepartment of Biomedical Sciences for Health, University of Milan, Milan, Italy.

Funding

KalVista Pharmaceuticals Inc.
6 · The paper itself

Abstract

backgroundHereditary angioedema (HAE) is a rare inherited disorder characterized by unpredictable and potentially life-threatening attacks of swelling. This international Delphi panel aimed to address questions related to on-demand treatment of HAE attacks.

methodsA modified Delphi method was conducted with three rounds of surveys. Two non-voting co-chairs designed and managed the surveys, data collection, and analysis with a third-party administrator. The international panel consisted of 19 expert HAE clinicians. Consensus was defined as ≥ 75% agreement with ≥ 75% of panelists voting.

resultsThe panel confirmed 24 statements across five key areas related to on-demand treatment: defining "early" treatment, barriers to early administration, burden of treatment, tolerability and convenience, and patient-clinician interactions. Panelists defined early treatment as ≤ 60 min after onset of an HAE attack. Obstacles to early treatment include recognition of an HAE attack, and embarrassment/anxiety about administering parenteral treatment. Access to on-demand treatment (i.e., carrying medication, cost, insurance coverage, regulatory approval) can be a burden for patients with HAE, and increasing access may improve adherence to guidelines. Logistical obstacles of parenteral administration that impact convenience, tolerability concerns (e.g., side effects), and cost of medication can all limit early use of on-demand treatment. Additional options for on-demand therapies beyond parenteral treatments could reduce some of the burdens. Panelists agreed that patient-physician shared decision-making should be utilized.

conclusionsThe Delphi consensus statements demonstrate the need for accessible and convenient on-demand treatments for HAE attacks that will enable patients with HAE to improve adherence to guidelines.

Indexed as

Delphiexpert consensushereditary angioedemaon‐demand treatmenttreatment guidelines

Identifiers

PMID41781192
PMCPMC12960019

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.