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Necesidades no satisfechas en la hemofilia: una revisión narrativa

Rabindra K Jena¹, Tuphan K Dolai², Jina Bhattacharyya³

¹Professor and Bone Marrow Transplant Physician, Department of Clinical Hematology, Srirama Chandra Bhanja Medical College and Hospital, Cuttack, Odisha, India, Corresponding Author, Orcid: https://orcid.org/0000-0001-9525-3016.

The Journal of the Association of Physicians of India

|August 21, 2025

Resumen

Esta revisión pone de relieve las necesidades no cubiertas en el tratamiento de la hemofilia, incluida la protección inadecuada de la hemorragia y la carga de la artropatía hemofílica. Abordarlos es clave para mejorar la calidad de vida y los resultados del paciente.

Área de la Ciencia:

Hematología
La genética
Salud pública

Sus antecedentes:

La hemofilia es un trastorno hemorrágico genético raro que requiere un tratamiento integral de por vida.
Los tratamientos actuales tienen como objetivo mejorar la esperanza de vida y la calidad de vida.
A pesar de los avances, siguen existiendo desafíos significativos en el cuidado de la hemofilia.

Objetivo del estudio:

Revisar el estado actual de la gestión de la hemofilia.
Identificar y analizar las necesidades clínicas no cubiertas en la hemofilia.
Para enfatizar el impacto de la hemofilia en la vida de los pacientes.

Principales métodos:

Revisión de la literatura sobre las estrategias de manejo de la hemofilia.
Análisis de las opciones de tratamiento actuales y sus limitaciones.
Evaluación de los resultados informados por los pacientes y la calidad de vida.

Principales resultados:

Protección subóptima de la hemorragia con las terapias profilácticas existentes.
El desarrollo de alloanticuerpos inhibidores complica el tratamiento.
La artropatía hemofílica (HA) conduce al daño articular y la discapacidad.
La carga física y psicológica significativa tiene un impacto en la educación, el empleo y la calidad de vida.

Conclusiones:

Se necesitan terapias innovadoras para mejorar el control de la hemorragia.
Abordar el desarrollo de anticuerpos es fundamental.
Las estrategias de tratamiento individualizadas y un mejor acceso a la atención son esenciales.
Reducir la carga de la hemofilia, especialmente en regiones de alta prevalencia como la India, requiere intervenciones enfocadas.

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