1. National audit of a hereditary and acquired angioedema cohort in New Zealand
- Author
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Ignatius Chua, Karen Lindsay, Anthony Jordan, and Simone Stephens
- Subjects
Pediatrics ,medicine.medical_specialty ,biology ,business.industry ,Audit ,medicine.disease ,C1-inhibitor ,Long-term care ,Quality of life ,Cohort ,Hereditary angioedema ,Health care ,Internal Medicine ,biology.protein ,Medicine ,business ,Tranexamic acid ,medicine.drug - Abstract
Background HAE leads to significant morbidity and mortality from unpredictable intermittent peripheral, abdominal and laryngeal swelling. Access to appropriate healthcare and effective therapies which can prevent and treat attacks, reduce the suffering and greatly improve quality of life. Although treatments such as C1 inhibitor (Berinert®), and Icatibant® are available in New Zealand (Aotearoa), there is no published data available on their use. Aims This study presents a national audit of Hereditary Angioedema (HAE) and Acquired Angioedema (AAE) in 2019. Results The total number of known adult (48) and children (3) HAE and Acquired Angioedema (3) patients is 54. Of these, 41/ 54 (75%) of HAE and AAE patients were recruited to the audit. Icatibant® has been available for treatment of acute HAE attacks since 2016, and is now used in 73% of HAE patients. Icatibant® is also used by patients for laryngeal attacks in the community, who may not then present to hospital. Androgens are used in half of the patients as prophylaxis but 33% of the latter were identified as not having regular liver ultrasound screening. Tranexamic acid is used as prophylaxis in one fifth of patients. Participants have had 40 children, half of whom may be affected. Three have been diagnosed with HAE, suggesting that the majority have not yet been tested. Conclusions Corrective actions arising from this audit will improve our capacity to provide long term care for HAE patients and their families. This article is protected by copyright. All rights reserved.
- Published
- 2022