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

Hereditary angioedema (HAE) is a rare disorder that imposes a substantial burden on patient health and quality of life. Although international studies have highlighted specific aspects of the HAE care continuum, comprehensive evidence on patient experiences in China remains scarce.

We conducted a single-center, mixed-methods study to develop the first HAE Patient Journey Map (HAE-PJM) in China. Fifteen adult patients with HAE were recruited for structured interviews (July-November 2024), complemented by quantitative assessments using the Hospital Anxiety and Depression Scale (HADS) and the Angioedema Control Test (AECT). Stakeholder validation was obtained through expert-patient groups.

Patients experienced a mean diagnostic delay of 16.3 years, with 80% reporting misdiagnosis and high rates of inappropriate interventions, underscoring systemic deficiencies in early recognition. Pre-diagnosis, activity limitations, and anxiety were common; genetic and economic anxieties persisted even after treatment initiation despite improvements in HADS and AECT scores. Prophylactic regimens achieved superior disease control compared with on-demand therapy, yet access barriers-including cost, reimbursement, and drug availability-remained prevalent. Expert-patient group validation confirmed the relevance of a phased patient journey map and emphasized multidisciplinary roles, including physicians, nurses, navigators, and societal support systems.

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.