Global Physician Survey Identifies Persistent Gaps in Achieving Treatment Goals for Hereditary Angioedema
Despite updated international guidelines, many patients with hereditary angioedema (HAE) have not achieved full disease control, according to findings from the MENTALIST survey, the first global physician assessment of unmet needs in HAE management.
MENTALIST surveyed 64 HAE-expert physicians from 32 countries using a 24-question, web-based instrument focused on disease management and unmet needs. Most respondents (91%) had more than 5 years of experience treating HAE. Physicians ranked challenges from both their own perspective and that of their patients using a standardized 10-point scale.
Nearly half of respondents reported suboptimal outcomes. Overall, 48% indicated that fewer than half of their patients had achieved the World Allergy Organization/European Academy of Allergy and Clinical Immunology (WAO/EAACI) treatment goals of complete disease control and life “normalization.” The findings suggest that guideline publication alone has not translated into consistent clinical success.
Implementation of consensus recommendations varied widely by region. According to respondents, gaps in knowledge among non-HAE-expert physicians represented a major obstacle, particularly for diagnosis, referral, and appropriate treatment selection. Financial barriers also ranked highly. Treatment costs and limited reimbursement for long-term prophylaxis were identified as leading challenges, restricting broader adoption of recommended therapies.
Physicians also reported that disease burden remains substantial for many patients. The survey revealed a disconnect between therapeutic advances and real-world outcomes, with ongoing attacks and lifestyle disruption persisting despite available options. As the authors noted, “burden of disease remains a challenge among patients, as reported by their physicians.”
The authors concluded that the findings “highlight a need for removal of barriers to HAE treatment goals” and called for coordinated action to improve care delivery. Proposed priorities included enhanced physician and patient education, improved access to effective treatments, and closer collaboration among clinicians, patient organizations, and industry stakeholders.
For immunologists, the key takeaway is that achieving guideline-defined disease control in HAE requires more than therapeutic availability. Addressing educational gaps, reimbursement limitations, and regional disparities is essential to translating advances into meaningful patient outcomes.
Reference
Buttgereit T, Aulenbacher F, Adatia A, et al. Unmet needs in hereditary angioedema: an international survey of physicians. Orphanet J Rare Dis. Published online July 28, 2025. doi:10.1186/s13023-025-03739-8
