{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,28]],"date-time":"2026-01-28T21:16:54Z","timestamp":1769635014620,"version":"3.49.0"},"reference-count":0,"publisher":"Oceanside Publications Inc.","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["allergy asthma proc"],"published-print":{"date-parts":[[2019,5,1]]},"abstract":"<jats:p><jats:bold>Background:<\/jats:bold> Hereditary angioedema (HAE) is an autosomal dominant disorder that affects \u223c1 in 50,000 individuals. The disorder is characterized by spontaneous and gradual episodes of edema in subcutaneous tissues or mucosal membrane that may endanger the patient's life.\n Previous studies that concern HAE treatment and burden of illness in the United States and Europe suggest an improvement in the control of HAE. However, no similar data are available in South American patients. The purpose of the present study was to evaluate the burden of disease and compliance\n to therapy of patients with HAE in Brazil.  <jats:bold>Methods:<\/jats:bold> We developed a structured questionnaire to assess the variables that influence the diagnosis and treatment of Brazilian patients with HAE. The questionnaire was evaluated by allergists with expertise in HAE and was reformatted\n before applying it. The consent form was included before survey access; approval from the ethic committee of Faculdade de Medicina do ABC (Santo Andr\u00e9, S\u00e3o Paulo, Brazil) was ensured. The Brazilian association of patients with HAE distributed the survey by e-mail to associated\n patients all over the country, and responses were accepted within a period of 3 months after signing a consent form.  <jats:bold>Results:<\/jats:bold> Ninety patients (67 women, 23 men; average age, 36.5 years) responded; the main findings were the following: 53 of 90 (64%) had no need of visiting\n emergency departments in the past 6 months; 71 of 90 (79%) reported life-threatening fear due to their diagnosis; 73 of 90 (83%) had other family members affected, but 54 of 73 of these affected relatives did not look for specific HAE treatment; and 26 of 90 (29%) reported death due to asphyxia\n or throat swelling in family members.  <jats:bold>Conclusion:<\/jats:bold> Patients with HAE report understanding how severe their diagnosis represent, but they did not ponder how important their commitment to treatment may decrease the constant fear brought by the disease in its possible swelling\n crisis. Family data supported this conclusion.<\/jats:p>","DOI":"10.2500\/aap.2019.40.4207","type":"journal-article","created":{"date-parts":[[2019,4,25]],"date-time":"2019-04-25T04:32:40Z","timestamp":1556166760000},"page":"193-197","source":"Crossref","is-referenced-by-count":11,"title":["Assessment on hereditary angioedema burden of illness in Brazil: A patient perspective"],"prefix":"10.2500","volume":"40","author":[{"given":"Anderson","family":"Abdon Barbosa","sequence":"first","affiliation":[{"name":"From the Clinical Immunology, Faculdade de Medicina do ABC, Santo Andre, S\u00e3o Paulo, Brazil;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Raquel","family":"de Oliveira Martins","sequence":"additional","affiliation":[{"name":"Associa\u00e7\u00e3o Brasileira de Portadores de Angioedema Heredit\u00e1rio"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Renata","family":"Martins","sequence":"additional","affiliation":[{"name":"Associa\u00e7\u00e3o Brasileira de Portadores de Angioedema Heredit\u00e1rio"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anete Sevciovic","family":"Grumach","sequence":"additional","affiliation":[{"name":"From the Clinical Immunology, Faculdade de Medicina do ABC, Santo Andre, S\u00e3o Paulo, Brazil;"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1355","container-title":["Allergy and Asthma Proceedings"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.ingentaconnect.com\/content\/ocean\/aap\/2019\/00000040\/00000003\/art00011","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2020,8,19]],"date-time":"2020-08-19T12:39:00Z","timestamp":1597840740000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.ingentaconnect.com\/content\/10.2500\/aap.2019.40.4207"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,5,1]]},"references-count":0,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2019,5,1]]}},"alternative-id":["1088-5412(20190501)40:3L.193;1-"],"URL":"https:\/\/doi.org\/10.2500\/aap.2019.40.4207","relation":{},"ISSN":["1088-5412"],"issn-type":[{"value":"1088-5412","type":"print"}],"subject":[],"published":{"date-parts":[[2019,5,1]]}}}