دورية أكاديمية
The complexities of decision-making associated with on-demand treatment of hereditary angioedema (HAE) attacks.
| العنوان: | The complexities of decision-making associated with on-demand treatment of hereditary angioedema (HAE) attacks. |
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| المؤلفون: | Betschel SD; Clinical Immunology and Allergy, Department of Medicine, University of Toronto, Toronto, ON, Canada. Stephen.Betschel@unityhealth.to., Caballero T; Servicio de Alergia, Hospital Universitario la Paz, CIBERER U754, IdiPAZ Group 44, Madrid, Spain., Jones DH; Rocky Mountain Allergy at Tanner Clinic, Layton, Utah, USA., Longhurst HJ; Department of Medicine, University of Auckland and Auckland City Hospital, Te Toka Tumai, Auckland, New Zealand., Manning M; Allergy, Asthma & Immunology Associates, Ltd., Internal Medicine, UA College of Medicine-Phoenix, Scottsdale, AZ, USA., van Kooten S; KalVista Pharmaceuticals, Inc, Cambridge, MA, USA., Heckmann M; KalVista Pharmaceuticals, Inc, Cambridge, MA, USA., Danese S; Outcomes Insights, Agoura Hills, CA, USA., Goga L; Division of Allergy and Immunology, Howard University Hospital, Washington, DC, USA., Burnette AF; Department Division Director Clinical Immunology and Allergy, Staff Clinical Immunologist and Allergist, University of Toronto, St. Michael's Hospital, 36 Toronto St, Suite 700, Toronto, ON, M5C 2C5, Canada. |
| المصدر: | Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology [Allergy Asthma Clin Immunol] 2024 Jul 25; Vol. 20 (1), pp. 43. Date of Electronic Publication: 2024 Jul 25. |
| نوع المنشور: | Journal Article |
| اللغة: | English |
| بيانات الدورية: | Publisher: Country of Publication: England NLM ID: 101244313 Publication Model: Electronic Cited Medium: Print ISSN: 1710-1484 (Print) Linking ISSN: 17101484 NLM ISO Abbreviation: Allergy Asthma Clin Immunol Subsets: PubMed not MEDLINE |
| أسماء مطبوعة: | Publication: Oct. 2009- : London : BioMed Central Original Publication: Hamilton, Ont. : BC Decker, c2004- |
| مستخلص: | Background: Hereditary angioedema (HAE) is characterized by debilitating attacks of tissue swelling in various locations. While guidelines recommend the importance of early on-demand treatment, recent data indicate that many patients delay or do not treat their attacks. Objective: This survey aimed to investigate patient behavior and evaluate the key factors that drive on-demand treatment decision-making, as reported by those living with HAE. Methods: People living with HAE were recruited by the US Hereditary Angioedema Association (HAEA) to complete a 20-minute online survey between September 6, and October 19, 2022. Results: Respondents included 107 people with HAE, 80% female, 98% adults (≥ 18 years). Attack management included on-demand therapy only (50%, n = 53) or prophylaxis with on-demand therapy (50%, n = 54). Most patients (63.6%) reported that they did not carry on-demand treatment at all times when away from home. The most common reason for not carrying on-demand treatment when away from home was 'prefer to treat at home' (72.1%). Overall, 86% of respondents reported delaying on-demand treatment, despite recognizing the initial onset of an HAE attack and despite 97% of patients agreeing that it is important to recover quickly from an HAE attack. Reasons for non-treatment or treatment delay included 'the attack is not severe enough to treat' (91.9% and 88.0%, respectively), 'cost of treatment' (31.1% and 40.2%, respectively), anxiety about refilling the prescription for on-demand treatment quickly (31.1% and 37.0%, respectively), the pain (injection or burning) associated with their on-demand treatment (18.9% and 28.3%, respectively), the lack of a suitable/private area to administer on-demand treatment (17.6% and 27.2%, respectively), lack of time to prepare on-demand treatment (16.2% and 16.3%, respectively), and a 'fear of needles' (13% and 12.2%, respectively). Survey findings from the patient perspective revealed that when on-demand treatment was delayed, 75% experienced HAE attacks that progressed in severity, and 80% reported longer attack recovery. Conclusions: Survey results highlight that decision-making regarding on-demand treatment in HAE is more complicated than expected. The burden associated with current parenteral on-demand therapies is often the cause of treatment delay, despite acknowledgment that delays may result in progression of HAE attacks and longer time to recovery. (© 2024. The Author(s).) |
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| فهرسة مساهمة: | Keywords: Attacks; Decision-making, Burden of treatment, Survey, HAE attack journey; Hereditary angioedema (HAE); On-demand treatment |
| تواريخ الأحداث: | Date Created: 20240725 Latest Revision: 20240728 |
| رمز التحديث: | 20240728 |
| مُعرف محوري في PubMed: | PMC11271048 |
| DOI: | 10.1186/s13223-024-00903-w |
| PMID: | 39049074 |
| قاعدة البيانات: | MEDLINE |
Find this article in full text from Springer Verlag. 
Full Text Finder | تدمد: | 1710-1484 |
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| DOI: | 10.1186/s13223-024-00903-w |