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Desarrollar un mapa de viaje del paciente para mejorar la atención y la experiencia en pacientes chinos con
Yin Wang1,2,3, Yangxue Fu1,2, Hao Chen1,2
1Department of Allergy, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, China.
The World Allergy Organization journal
|February 9, 2026
Resumen
Los pacientes con angioedema hereditario (EAH) en China se enfrentan a largos retrasos en el diagnóstico y a importantes desafíos de atención. Este estudio desarrolló el primer mapa de viaje del paciente HAE, destacando las necesidades de un mejor diagnóstico, apoyo y acceso a la atención.
Área de la Ciencia:
- Investigación de enfermedades raras.
- Estudios de la experiencia del paciente.
- Servicios de salud investigación servicios de salud.
Sus antecedentes:
- El angioedema hereditario (EAH) afecta significativamente la salud y la calidad de vida del paciente.
- Existen estudios internacionales, pero faltan datos completos sobre las experiencias de los pacientes con HAE en China.
Objetivo del estudio:
- Desarrollar el primer mapa de viaje del paciente con angioedema hereditario (HAE-PJM) en China.
- Identificar los puntos críticos de contacto y los cuellos de botella en el continuo de atención de HAE dentro del contexto chino.
Principales métodos:
- Un estudio de métodos mixtos en el que participaron 15 pacientes adultos con AEH.
- Se utilizaron entrevistas estructuradas, la Escala de Ansiedad y Depresión Hospitalaria (HADS) y la Prueba de Control de Angioedema (AECT).
- Los grupos experto-paciente proporcionaron la validación de las partes interesadas.
Principales resultados:
- Se observó un retraso medio en el diagnóstico de 16,3 años, con un 80% experimentando un diagnóstico erróneo.
- La ansiedad y las limitaciones de la actividad eran comunes; las preocupaciones genéticas y económicas persistieron después del tratamiento.
- La terapia profiláctica mejoró el control de la enfermedad, pero las barreras de acceso (costo, reembolso, disponibilidad) eran frecuentes.
Conclusiones:
- El HAE-PJM proporciona información sistemática sobre el cuidado de HAE en China.
- Se propone un marco "4T" (prueba, enseñanza, monitoreo terapéutico, trabajo en equipo) para abordar las brechas de atención.
- Las necesidades urgentes incluyen diagnósticos estandarizados, apoyo psicosocial / financiero y modelos de atención accesibles.
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