Evaluating satisfaction of patients with hereditary angioedema with their past and present treatments: Implications for future therapies
- 1 January 2018
- journal article
- research article
- Published by Oceanside Publications Inc. in Allergy and Asthma Proceedings
- Vol. 39 (1), 74-80
- https://doi.org/10.2500/aap.2018.39.4095
Abstract
Background: Ever-expanding armamentarium of treatments for hereditary angioedema (HAE) are associated with various adverse effects, issues with vascular access, or lack of self-administration. Objective: To understand patients' impressions and confidence in their past and present treatments, and identifying adverse events while also directly asking patients to reveal their hope for the future of HAE management and treatments. Methods: After institutional review board approval, all subjects with laboratory-confirmed HAE were mailed a survey that they completed and returned to the researchers, and data were collected and entered into a secure online web application for surveys. Medication confidence data were summarized and expressed as means, medians, standard deviations, and quartiles by using a 5-point Likert scale. Analyses were performed by using statistical software. Results: Of 150 surveys, 38 (25.3%) were completed. Among 36 subjects, 27 (75.0%) were female subjects, and the mean age was 50.1 years. Cinryze and Berinert (both C1-esterase inhibitors) had the highest median scores (5.0) for patient confidence, followed by ecallantide (4.5), icatibant (4.0), and androgens (2.0). For Cinryze, 64.3% selected it as the most effective and 57.1% tolerated it best. For Berinert, 50% of the subjects found it to be most effective and 59.1% tolerated it best. Some subjects listed androgens as most effective (33.3%) or best tolerated (16.7%), and many reported that this class caused the most adverse effects (44.4%). Among those who answered, 50% preferred a noninvasive method of administration, such as oral (24%), subcutaneous (18%), or not intravenous (8%) routes. Conclusion: Determining patient predilections and the reasoning behind them can be valuable for determining specific therapies to achieve each individual's personal goals.This publication has 29 references indexed in Scilit:
- US Hereditary Angioedema Association Medical Advisory Board 2013 Recommendations for the Management of Hereditary Angioedema Due to C1 Inhibitor DeficiencyThe Journal of Allergy and Clinical Immunology: In Practice, 2013
- Current options for prophylactic treatment of hereditary angioedema in the United States: patient-based considerationsAllergy and Asthma Proceedings, 2012
- Hereditary angioedema (HAE) in children and adolescents—a consensus on therapeutic strategiesEuropean Journal of Pediatrics, 2012
- Guideline for Hereditary Angioedema (HAE) 2010 by the Japanese Association for Complement Research - Secondary PublicationAllergology International, 2012
- International consensus and practical guidelines on the gynecologic and obstetric management of female patients with hereditary angioedema caused by C1 inhibitor deficiencyJournal of Allergy and Clinical Immunology, 2011
- The humanistic burden of hereditary angioedema: Impact on health-related quality of life, productivity, and depressionAllergy and Asthma Proceedings, 2010
- HAE international home therapy consensus documentAllergy, Asthma & Clinical Immunology, 2010
- Frequency, timing, and type of prodromal symptoms associated with hereditary angioedema attacksAllergy and Asthma Proceedings, 2009
- Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics supportJournal of Biomedical Informatics, 2008
- Canadian 2003 International Consensus Algorithm for the Diagnosis, Therapy, and Management of Hereditary AngioedemaJournal of Allergy and Clinical Immunology, 2004