Yanira M Arce-Ayala1, Yaritza Diaz-Algorri2, Timothy Craig3, Cristina Ramos-Romey4. 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.
Abstract
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.
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 HAEpatients and an increase risk for depression, particularly among woman.
Authors: Konrad Bork; John T Anderson; Teresa Caballero; Timothy Craig; Douglas T Johnston; H Henry Li; Hilary J Longhurst; Cristine Radojicic; Marc A Riedl Journal: Allergy Asthma Clin Immunol Date: 2021-04-19 Impact factor: 3.406
Authors: Timothy J Craig; Rafael H Zaragoza-Urdaz; H Henry Li; Ming Yu; Hong Ren; Salomé Juethner; John Anderson Journal: Allergy Asthma Clin Immunol Date: 2022-09-24 Impact factor: 3.373
Authors: Alejandro Mendoza-Alvarez; Eva Tosco-Herrera; Adrian Muñoz-Barrera; Luis A Rubio-Rodríguez; Aitana Alonso-Gonzalez; Almudena Corrales; Antonio Iñigo-Campos; Lourdes Almeida-Quintana; Elena Martin-Fernandez; Dara Martinez-Beltran; Eva Perez-Rodriguez; Ariel Callero; Jose C Garcia-Robaina; Rafaela González-Montelongo; Itahisa Marcelino-Rodriguez; Jose M Lorenzo-Salazar; Carlos Flores Journal: Front Immunol Date: 2022-09-20 Impact factor: 8.786