ArticleHealth and quality of life outcomes2019
Angioedema quality of life questionnaire (AE-QoL) - interpretability and sensitivity to change.
Article in Health and quality of life outcomes, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 2 of them syntheses that pooled it.
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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
23 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Network Meta-Analysis of Pharmacological Therapies for Long-Term Prophylactic Treatment of Patients with Hereditary Angioedema.Drugs in R&D · 2025Pooled it
- The Dermatology Life Quality Index (DLQI) used as the benchmark in validation of 101 quality-of-life instruments: A systematic review.Journal of the European Academy of Dermatology and Venereology : JEADV · 2025Pooled it
- Garadacimab in Hereditary Angioedema: Modeling Suggests Sustained Improvements in Attack-Free Probability and Quality of Life Over 5 Years.Clinical and translational science · 2026Trial
- Matching-adjusted indirect comparison between garadacimab and lanadelumab for the long-term prophylactic treatment of patients with hereditary angioedema.Journal of comparative effectiveness research · 2025Trial
- Impact of lanadelumab on health-related quality of life in patients with hereditary angioedema in the HELP study.Allergy · 2021Trial
- Limited access to on-demand treatment in hereditary angioedema is linked to delayed treatment and impaired patient-reported outcomes: A multinational real-world study.The journal of allergy and clinical immunology. Global · 2026Article
- Burden of Hereditary Angioedema in Adults: Impact of Disease and Patient Characteristics.International archives of allergy and immunology · 2026Article
- Psychometric validation of the Angioedema Quality of Life Questionnaire (AE-QoL) for hereditary angioedema.Journal of patient-reported outcomes · 2026Article
- Burden of disease in adult patients with hereditary angioedema: results from a multinational survey.Orphanet journal of rare diseases · 2026Article
- Burden of hereditary angioedema: results from a multinational survey of caregivers for adult and pediatric patients.Orphanet journal of rare diseases · 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
- Delphi Consensus on Attenuated Androgen Use for Long-Term Prophylaxis in Hereditary Angioedema: AURA Project.Clinical and translational allergy · 2025Article
- Analysis of disease burden in patients with hereditary angioedema from Japan by patient-reported outcomes.The Journal of dermatology · 2025Article
- [What are the main symptoms of urticaria and how are they systematically recorded?]Dermatologie (Heidelberg, Germany) · 2024Review
- 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
- Mepolizumab incompletely suppresses clinical flares in a pilot study of episodic angioedema with eosinophilia.The Journal of allergy and clinical immunology · 2024Article
- Chronic Spontaneous Urticaria: How to Measure It and the Need to Define Treatment Success.Dermatology and therapy · 2023Review
- Content validation and psychometric evaluation of the Angioedema Quality of Life Questionnaire for hereditary angioedema.Journal of patient-reported outcomes · 2023Article
- The international WAO/EAACI guideline for the management of hereditary angioedema - The 2021 revision and update.The World Allergy Organization journal · 2022Article
- Quality of life in patients with allergic and immunologic skin diseases: in the eye of the beholder.Clinical and molecular allergy : CMA · 2021Review
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe Angioedema Quality of Life (AE-QoL) is the first patient reported outcome measure developed for the assessment of quality of life (QoL) impairment in patients with recurrent angioedema (RAE). This study aimed to evaluate the clinimetric properties of the AE-QoL in Thai patients and to establish categories of QoL impairment assessed by the AE-QoL.
methodsThe validated Thai version of the Dermatology Life Quality Index (DLQI) and Patient Global Assessment of Quality of Life (PGA-QoL) were used to comparatively evaluate the Thai version of AE-QoL. Spearman correlations between the Thai AE-QoL and two other standard measurements (DLQI and PGA-QoL) were investigated to determine convergent validity. The Thai DLQI and PGA-QoL were used to categorize patients according to their QoL. Known-group validity of the Thai AE-QoL was later analyzed. The reliability of the Thai AE-QoL was investigated using Cronbach's alpha and intraclass correlation. Three different approaches including the distribution method, receiver operating characteristic curve analysis, and the anchor based-method were used for the interpretability.
resultsA total of 86 patients with RAE with a median age of 38.0 ± 15.1 years (range 18-76) were enrolled. Of those, 76 patients (88%) had RAE with concomitant wheals, and 10 patients (11.6%) had RAE only. The AE-QoL assessed RAE-mediated QoL impairment with high convergent validity and known-groups validity, high internal consistency and test-retest reliability, and good sensitivity to change. Although the AE-QoL did not differentiate between patients with moderate and large effect as measured by PGA-QoL or DLQI in this study, AE-QoL total values of 0-23, 24 to 38, and ≥ 39 could define patients with "no effect", "small effect", and "moderate to large effect" of RAE on their QoL, respectively.
conclusionsThis study supports the validity and reliability of the Thai version of the AE-QoL, which is a very different language from the original version. Categories allow to classify the effect of RAE on patients' QoL as "none", "small", and "moderate to large". Further studies are needed to confirm the applicability of AE-QoL in other Asian populations".
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