CALIDAD DE VIDA Y HEMOFILIA: UNA REVISIÓN DE LA LITERATURA (Quality of life and hemophilia: A literature review)

Luis Fernando Muñoz Grass, Ximena Palacios Espinosa

Resumen


La hemofilia es una enfermedad crónica y hasta el momento incurable, sin embargo, los avances médicos han permitido mayor sobrevida y mejor calidad de vida (CV) entre quienes la desarrollan. El objetivo de esta revisión es presentar la situación actual de la literatura científica sobre la CV en las personas con hemofilia, producida entre 2008-2012. Se encontró que las investigaciones se han centrado en los factores fisiológicos que afectan negativamente o protegen la CV de estas personas; no obstante, se evidencia la necesidad de atender también los factores psicosociales. Los instrumentos especializados para la evaluación de la CV en pacientes con hemofilia son escasos y las publicaciones revisadas se centran en la evaluación más que en la intervención de la CV. Al contrario de lo que sucede en otros países, en Colombia no se encontraron investigaciones sobre la CV en pacientes hemofílicos y por lo tanto se desconoce el impacto de esta enfermedad sobre la funcionalidad y el bienestar de estos pacientes.

Palabras claves: Calidad de vida, Conducta Saludable, Enfermedad de von Willebrand, Factores de riesgo, Hemofilia, Hemofilia A, Hemofilia B

 

Abstract

Hemophilia is a chronic disease but medical advances have improved survival and quality of life among those who have developed it. The aim of this review is to present the current state of the literature on quality of life of people with hemophilia, produced between 2008 and 2012. It is found that the research has been focused on the physiological factors that adversely affect or protect the quality of life of these people; however, the evidence shows that it is also necessary to address the psychosocial factors. Specialized tools for assessing quality of life in hemophiliacs are few as well as empirical evaluation focuses on the operation rather than on the quality of life. Contrary to what happens in other countries, in Colombia there is no evidence of research on quality of life in patients with hemophilia and therefore the impact of this disease on the functionality and well-being of these patients is unknown.

Keywords: Health Behavior, Hemophilia, Hemophilia A, Hemophilia B, Protector Factors, Protective Factors, Literature Review, Quality of life, Risk Factors, von Willebrand Diseases.

 


Palabras clave


Calidad de vida; Conducta Saludable; Enfermedad de von Willebrand; Factores de riesgo; Hemofilia; Hemofilia A; Hemofilia B

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Referencias


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