Real-world outcomes in hereditary angioedema : first experience from the Icatibant Outcome Survey in the United Kingdom
BACKGROUND: Hereditary angioedema (HAE) is a potentially life-threatening, bradykinin-mediated disease, often misdiagnosed and under-treated, with long diagnostic delays. There are limited real-world data on best-practice management of HAE in the UK.
OBJECTIVES: To characterize the clinical profile, management and outcomes of patients with HAE type I and II from three specialist centres in the UK using data from the Icatibant Outcome Survey (IOS; Shire, Zug, Switzerland), an international observational study monitoring safety and effectiveness of icatibant, a selective bradykinin B2 receptor antagonist.
METHODS: We performed retrospective analyses of IOS data for patients with HAE type I and II from three centres in the UK and compared UK data with pooled IOS data from 10 countries (48 centres).
RESULTS: Analyses included 73 UK and 579 non-UK patients with HAE type I or II. Median diagnostic delay was 6.2 and 5.9 years, respectively. Analysis of data collected from February 2008 to July 2016 included 286 icatibant-treated attacks in 58 UK patients and 2553 icatibant-treated attacks in 436 non-UK patients (median of 3.0 attacks per patient in both groups). More attacks were treated by icatibant self-administration in UK patients (95.8%) than in non-UK patients (86.8%, p < 0.001). Time to icatibant treatment, time to resolution and attack duration were not significantly different in the UK versus non-UK patients.
CONCLUSION: UK patients from the specialist centres studied report similar diagnostic delay and similar icatibant treatment outcomes to their non-UK counterparts. However, improvements in the timely diagnosis of HAE are still required.Trial registration ClinicalTrials.gov NCT01034969.
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2018 |
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| Erschienen: |
2018 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:14 |
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| Enthalten in: |
Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology - 14(2018) vom: 20., Seite 28 |
| Sprache: |
Englisch |
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| Beteiligte Personen: |
Longhurst, Hilary J [VerfasserIn] |
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| Links: |
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| Themen: |
Acquired angioedema |
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| Anmerkungen: |
Date Revised 18.03.2022 published: Electronic-eCollection ClinicalTrials.gov: NCT01034969 Citation Status PubMed-not-MEDLINE |
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| doi: |
10.1186/s13223-018-0253-x |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| PPN (Katalog-ID): |
NLM287664031 |
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| 100 | 1 | |a Longhurst, Hilary J |e verfasserin |4 aut | |
| 245 | 1 | 0 | |a Real-world outcomes in hereditary angioedema |b first experience from the Icatibant Outcome Survey in the United Kingdom |
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| 500 | |a ClinicalTrials.gov: NCT01034969 | ||
| 500 | |a Citation Status PubMed-not-MEDLINE | ||
| 520 | |a BACKGROUND: Hereditary angioedema (HAE) is a potentially life-threatening, bradykinin-mediated disease, often misdiagnosed and under-treated, with long diagnostic delays. There are limited real-world data on best-practice management of HAE in the UK | ||
| 520 | |a OBJECTIVES: To characterize the clinical profile, management and outcomes of patients with HAE type I and II from three specialist centres in the UK using data from the Icatibant Outcome Survey (IOS; Shire, Zug, Switzerland), an international observational study monitoring safety and effectiveness of icatibant, a selective bradykinin B2 receptor antagonist | ||
| 520 | |a METHODS: We performed retrospective analyses of IOS data for patients with HAE type I and II from three centres in the UK and compared UK data with pooled IOS data from 10 countries (48 centres) | ||
| 520 | |a RESULTS: Analyses included 73 UK and 579 non-UK patients with HAE type I or II. Median diagnostic delay was 6.2 and 5.9 years, respectively. Analysis of data collected from February 2008 to July 2016 included 286 icatibant-treated attacks in 58 UK patients and 2553 icatibant-treated attacks in 436 non-UK patients (median of 3.0 attacks per patient in both groups). More attacks were treated by icatibant self-administration in UK patients (95.8%) than in non-UK patients (86.8%, p < 0.001). Time to icatibant treatment, time to resolution and attack duration were not significantly different in the UK versus non-UK patients | ||
| 520 | |a CONCLUSION: UK patients from the specialist centres studied report similar diagnostic delay and similar icatibant treatment outcomes to their non-UK counterparts. However, improvements in the timely diagnosis of HAE are still required.Trial registration ClinicalTrials.gov NCT01034969 | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a Acquired angioedema | |
| 650 | 4 | |a C1-inhibitor deficiency | |
| 650 | 4 | |a Hereditary angioedema | |
| 650 | 4 | |a Icatibant | |
| 650 | 4 | |a Icatibant Outcome Survey | |
| 700 | 1 | |a Dempster, John |e verfasserin |4 aut | |
| 700 | 1 | |a Lorenzo, Lorena |e verfasserin |4 aut | |
| 700 | 1 | |a Buckland, Matthew |e verfasserin |4 aut | |
| 700 | 1 | |a Grigoriadou, Sofia |e verfasserin |4 aut | |
| 700 | 1 | |a Symons, Christine |e verfasserin |4 aut | |
| 700 | 1 | |a Bethune, Claire |e verfasserin |4 aut | |
| 700 | 1 | |a Fabien, Vincent |e verfasserin |4 aut | |
| 700 | 1 | |a Bangs, Catherine |e verfasserin |4 aut | |
| 700 | 1 | |a Garcez, Tomaz |e verfasserin |4 aut | |
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