Developing a patient journey map to improve care and experience in Chinese patients with hereditary angioedema

This study provides the first systematic HAE-PJM in China, integrating qualitative and quantitative evidence to delineate critical touchpoints and bottlenecks in HAE care. To address these identified challenges, we propose a "4T″ framework (Testing, Teaching, Therapeutic Monitoring, and Team working). These findings highlight urgent needs for standardized diagnostic pathways, integrated psychosocial and financial support, and access-oriented care models.