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Clinical profile and quality of life of Puerto Ricans with hereditary angioedema

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Background:

There is limited data on clinical characteristics and quality of life (QoL) of Hereditary angioedema (HAE) patients in Puerto Rico.

Objective:

Create an epidemiological and clinical profile of patients with HAE and assess the burden of this condition on the general health of Puerto Ricans suffering the disease.

Methods:

A cross-sectional study was performed in 32 Puerto Rican patients with HAE. To obtain data on sociodemographic characteristics, clinical symptoms and treatment, a clinical survey based on a Spanish adaptation of the “HAEA Patient Summit Questionnaire 2015” was used. To measure QoL, the SF-36v2 questionnaire was used. IBM SPSS 22.0 (IBM, NY, USA) and QualityMetric Health Outcomes™ Scoring Software 4.5 was utilized for statistical analysis.

Results:

The most common type of HAE was Type I (41.9%). In 1 year, 32.3% of patients present 2‐3 attacks per month. The most common locations were: abdomen and face. Seventy-eight percent of patient developed laryngeal edema but only 6.5% needed tracheotomy. Fifty-eight percent of patients were using prophylaxis therapy; C1 esterase inhibitor (68.7%) being the most common. Eighty-one percent of patients were using rescue medication; Icatibant (80.8%) being the most common. Compared with US population norms of quality of life, patients with HAE in Puerto Rico reported significantly lower scores, both in the physical component (62%) and in the mental components (58%). The most affected parameters were emotional (38.52), physical (39.19) and social (39.79) components. Gender differences were observed in our sample; females scored below males in all components except for general health.

Conclusion:

Puerto Rican Hispanics showed a similar epidemiologic and clinical profile to previous studies, however; higher frequency of attacks was prominent. Our study demonstrates a substantial and noteworthy decrease in quality of life in HAE patients and an increase risk for depression, particularly among woman.
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Document Type: Research Article

Affiliations: 1: From the Allergy and Immunology Program, University of Puerto Rico School of Medicine, San Juan, Puerto Rico 2: San Juan Bautista Research Center, San Juan, Puerto Rico 3: Allergy Asthma Immunology, Milton S. Hershey Penn State, Hershey, Pennsylvania 4: University of Puerto Rico School of Medicine, San Juan, Puerto Rico

Publication date: March 1, 2019

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  • Allergy and Asthma Proceedings is a peer reviewed publication dedicated to distributing timely scientific research regarding advancements in the knowledge and practice of allergy, asthma and immunology. Its primary readership consists of allergists and pulmonologists.

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    Featured topics include asthma, rhinitis, sinusitis, food allergies, allergic skin diseases, diagnostic techniques, allergens, and treatment modalities. Published material includes peer-reviewed original research, clinical trials and review articles.

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    The journal is indexed in Thomson Reuters Web of Science and Science Citation Index Expanded, plus the National Library of Medicine's PubMed service.
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