ArticlePatient preference and adherence2016
Estimation of EuroQol 5-Dimensions health status utility values in hereditary angioedema.
Article in Patient preference and adherence, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
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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
22 citing papers in PubMed, 1 synthesis or guideline pooled it, 56 citations in OpenAlex.
- 'Mapping' Health State Utility Values from Non-preference-Based Measures: A Systematic Literature Review in Rare Diseases.PharmacoEconomics · 2020Pooled it
- Long-term safety and efficacy of garadacimab for preventing hereditary angioedema attacks: Phase 3 open-label extension study.Allergy · 2025Trial
- 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
- Trial
- The International/Canadian hereditary angioedema guideline.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2026Review
- Impact of hereditary angioedema attacks on health-related quality of life and work productivity.The World Allergy Organization journal · 2025Article
- Article
- The estimation of health state utility values in rare diseases: do the approaches in submissions for NICE technology appraisals reflect the existing literature? A scoping review.The European journal of health economics : HEPAC : health economics in prevention and care · 2023Article
- Time Trade-Off Utilities for Hereditary Angioedema Health and Caregiver States.PharmacoEconomics - open · 2022Article
- Long-term safety and effectiveness of berotralstat for hereditary angioedema: The open-label APeX-S study.Clinical and translational allergy · 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
- Prophylactic Treatment in Hereditary Angioedema Is Associated with Reduced Anxiety in Patients in Leipzig, Germany.International archives of allergy and immunology · 2021Article
- A Cost-Utility Study of Laparoscopic Cholecystectomy for the Treatment of Symptomatic Gallstones.Journal of gastrointestinal surgery : official journal of the Society for Surgery of the Alimentary Tract · 2020Article
- Hereditary angioedema: the challenges of cross-border family investigation and treatment.BMJ case reports · 2020Article
- [Hereditary angioedema].Der Internist · 2019Review
- The International/Canadian Hereditary Angioedema Guideline.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2019Review
- Treatment patterns and healthcare resource utilization among patients with hereditary angioedema in the United States.Orphanet journal of rare diseases · 2018Article
- Value co-creation in healthcare: evidence from innovative therapeutic alternatives for hereditary angioedema.BMC health services research · 2018Article
- Health-related quality of life in the Brazilian Amazon: a population-based cross-sectional study.Health and quality of life outcomes · 2017Article
Corrections and comments
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Authors and funding
7 authors at 4 institutions in 4 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo estimate health status utility (preference) weights for hereditary angioedema (HAE) during an attack and between attacks using data from the Hereditary Angioedema Burden of Illness Study in Europe (HAE-BOIS-Europe) survey. Utility measures quantitatively describe the net impact of a condition on a patient's life; a score of 0.0 reflects death and 1.0 reflects full health. STUDY DESIGN AND
methodsThe HAE-BOIS-Europe was a cross-sectional survey conducted in Spain, Germany, and Denmark to assess the real-world experience of HAE from the patient perspective. Survey items that overlapped conceptually with the EuroQol 5-Dimensions (EQ-5D) domains (pain/discomfort, mobility, self-care, usual activities, and anxiety/depression) were manually crosswalked to the corresponding UK population-based EQ-5D utility weights. EQ-5D utilities were computed for each respondent in the HAE-BOIS-Europe survey for acute attacks and between attacks.
resultsOverall, a total of 111 HAE-BOIS-Europe participants completed all selected survey items and thus allowed for computation of EQ-5D-based utilities. The mean utilities for an HAE attack and between attacks were 0.44 and 0.72, respectively. Utilities for an acute attack were dependent on the severity of pain of the last attack (0.61 for no pain or mild pain, 0.47 for moderate pain, and 0.08 for severe pain). There were no significant differences across countries. Mean utilities derived from the study approach compare sensibly with other disease states for both acute attacks and between attacks.
conclusionThe impacts of HAE translate into substantial health status disutilities associated with acute attacks as well as between attacks, documenting that the detrimental effects of HAE are meaningful from the patient perspective. Results were consistent across countries with regard to pain severity and in comparison to similar disease states. The results can be used to raise awareness of HAE as a serious disease with wide-ranging personal and social impacts.
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