Unmet needs in hereditary angioedema: an international survey of physicians.
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Buttgereit Thomas, Aulenbacher Felix, Adatia Adil, Ayala Carolina Vera, Al-Nesf Maryam Ali, Altrichter Sabine, Abuzakouk Mohamed, Al-Ahmad Mona, Ali Ramzy Mohammed, Berardi Alejandro, Boccon-Gibod Isabelle, Bouillet Laurence, Brussino Luisa, Barešić Marko, Busse Paula J, Betschel Stephen D, Chong-Neto Herberto, Llosa Oscar Calderón, Craig Timothy J, Dorr Anthony D, Junior Sérgio Duarte Dortas, Fomina Daria, Farkas Henriette, Fok Jie Shen, Grumach Anete S, Greve Jens, Guilarte Mar, Gonçalo Margarida, Grivcheva-Panovska Vesna, Hide Michihiro, Hakl Roman, Jindal Ankur, Katelaris Constance H, Kamaleswaran Shailajah, Kinaciyan Tamar, Latysheva Elena, Sousa José Ignacio Larco, Bellfill Ramón Lleonart, Mobayed Hassan, Metz Martin, Nasr Iman, Mitrevska Natasa T, Nicola Stefania, Parisi Claudio Alberto Salvador, Porebski Grzegorz, Peter Jonny, Ferriani Mariana Paes Leme, Filho Nelson Rosario, Şekerel Bülent Enis, Serpa Faradiba Sarquis, Stobiecki Marcin, Trainotti Susanne, Valerieva Anna, Wongsa Chamard, Wong Jane C Y, Yucel Esra, Li Yinglei, Nenci Chiara, Maurer Marcus, Magerl Markus, Li Philip H
Аннотация
METHODS: This 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).
RESULTS: Of 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.
CONCLUSIONS: The 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.