2026-04-17T12:07:58Zhttps://recercat.cat/oai/request
oai:recercat.cat:2445/2228422025-12-05T00:51:05Zcom_2072_1057col_2072_478916col_2072_478917
RECERCAT author Buttgereit, Thomas author Aulenbacher, Felix author Adatia, Adil author Vera Ayala, Carolina author Ali Al-Nesf, Maryam author Altrichter, Sabine author Abuzakouk, Mohamed author Al-Ahmad, Mona author Mohammed Ali, Ramzy author Berardi, Alejandro author Boccon-Gibod, Isabelle author Bouillet, Laurence author Brussino, Luisa author Barešić, Marko author Busse, Paula J. author Betschel, Stephen D. author Chong Neto, Herberto author Calderón Llosa, Óscar author Craig, Timothy J. author Dorr, Anthony D. author Duarte Dortas, Sérgio author Fomina, Daria author Farkas, Henriette author Shen Fok, Jie author Grumach, Anete S. author Greve, Jens author Guilarte, Mar author Gonçalo, Margarida author Grivcheva Panovska, Vesna author Hide, Michihiro author Hakl, Roman author Jindal, Ankur author Katelaris, Constance H. author Kamaleswaran, Shailajah author Kinaciyan, Tamar author Latysheva, Elena author Larco Sousa, José Ignacio author Lleonart Bellfill, Ramon author Mobayed, Hassan author Metz, Martin author Nasr, Iman author Mitrevska, Natasa T. author Nicola, Stefania author Salvador Parisi, Claudio Alberto author Porebski, Grzegorz author Peter, Jonny author Ferriani, Mariana Paes Leme author Rosario, Nelson author Şekerel, Bülent Enis author Sarquis Serpa, Faradiba author Stobiecki, Marcin author Trainotti, Susanne author Valerieva, Anna author Wongsa, Chamard author Wong, Jane C. Y. author Yucel, Esra author Li, Yinglei author Nenci, Chiara author Maurer, Marcus author Magerl, Markus author Li, Philip H. 2025-08-29T11:35:04Z2025-08-29T11:35:04Z2025-07-282025-08-26T11:16:17Z BackgroundHereditary angioedema (HAE) is a rare and potentially life-threatening genetic disorder characterized by unpredictable attacks of angioedema. MENTALIST (UnMEt Needs in herediTAry angioedema-a gLobal physIcian perSpecTive) is the first international survey uncovering unmet needs and identifying barriers to optimal management in HAE following the latest update of the World Allergy Organization (WAO)/European Academy of Allergy and Clinical Immunology (EAACI) HAE guidelines.MethodsThis web-based survey comprised 24 questions on HAE management and unmet needs. HAE-expert physicians from the Angioedema Centers of Reference and Excellence network ranked unmet needs according to their own perspectives and their patients' perspectives, using a 10-point Likert scale ranging from 0 (not a challenge/unmet need at all) to 10 (huge challenge/unmet need).ResultsOf 64 respondents from 32 countries, most (91%) had > 5 years of experience in managing HAE. Overall, 48% of respondents (n = 31/64) reported that < 50% of their patients had achieved the WAO/EAACI HAE treatment goals of total disease control and normalization of life at the time of the survey. Implementation of consensus recommendations was found to be inconsistent across regions. Gaps in non-HAE-expert physician knowledge, treatment costs, and reimbursement for long-term prophylaxis were the highest-priority challenges according to the respondents. Burden of disease remains a challenge among patients, as reported by their physicians.ConclusionsThe MENTALIST findings highlight a need for removal of barriers to HAE treatment goals and propose a call to action to improve access to treatments, for greater provision of education for physicians and patients, critical collaboration with patient organizations and industry stakeholders and ultimately to optimize HAE care. cc by (c) Buttgereit, Thomas et al, 2025 http://creativecommons.org/licenses/by/3.0/es/ info:eu-repo/semantics/openAccess Edema angioneuròtic Anafilaxi Angioneurotic edema Anaphylaxis Unmet needs in hereditary angioedema: an international survey of physicians info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion