Calidad de vida en personas con hemofilia: una revisión de la literatura


Autoria(s): Muñoz Grass, Luis Fernando
Contribuinte(s)

Palacios, Ximena

Data(s)

03/12/2013

31/12/1969

Resumo

Introducción: La hemofilia es una enfermedad poco frecuente; no obstante, los avances en los tratamientos de pacientes hemofílicos en las últimas décadas han generado cambios en su calidad de vida. Esto ha motivado el desarrollo de múltiples investigaciones al respecto. Objetivo: Revisar la literatura sobre la calidad de vida en el paciente hemofílico, producida en el periodo 2008-2012. Método: Se consultaron algunas bases de datos científicas utilizando como palabras clave “hemofilia” y “calidad de vida”. Se recopiló la información encontrada y se organizó según los objetivos propuestos en “factores negativos” y “factores protectores” de la calidad de vida a nivel fisiológico, psicosocial y cultural; “instrumentos para la evaluación de la calidad de vida” a nivel específico y general; y antecedentes empíricos de los últimos cinco años en los que se evaluara la calidad de vida o se realizara alguna intervención en la misma. Resultados: En general la información disponible sobre el comportamiento epidemiológico de la hemofilia es limitada. El interés por factores protectores y negativos es principalmente de tipo fisiológico, aunque se encontraron factores de tipo psicosocial y cultural, lo que indica la importancia de profundizar en esta temática. Existen pocos instrumentos especializados para la evaluación de la calidad de vida en hemofílicos. La evidencia empírica se centra en la evaluación. Conclusión: El estudio de la calidad de vida en pacientes hemofílicos amerita ser abordado de manera interdisciplinaria.

Introduction: Hemophilia is a rare disease, however, treatment development for hemophilic patients in last decades have generated changes in their quality of life. This has resulted in several researches about it. Objective: Review literature about quality of life in hemophilic patients, produced in 2008-2012. Method: Some scientific data bases were consulted using as keywords "hemophilia" and "quality of life". The information was collected and organized according to proposed objectives in physiological, psychosocial and cultural "negative factors" and "protecting factors" of quality of life; General or specific "Quality of life assessment tools"; and empirical background from the last five years about assessment or treatment of quality of life. Results: Overall, available information about the epidemiologic behavior of hemophilia is limited. Interest for protecting and negative factors is mainly of physiological type, although psychosocial and cultural factors were found, indicating the importance of further research on the subject. There are few quality of life specific assessment tools for hemophilia. Empirical background focuses on assessment. Conclusion: Hemophilic patients’ quality of life study deserves to be addressed in an interdisciplinary way.

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http://repository.urosario.edu.co/handle/10336/4816

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spa

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Escuela de Medicina y Ciencias de la Salud

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info:eu-repo/semantics/embargoedAccess

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reponame:Repositorio Institucional EdocUR

instname:Universidad del Rosario

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Zhou, Z. Y., Wu, J., Baker, J., Curtis, R., Forsberg, A., Huszti, H., (…), & Johnson K. (2011). Haemophilia Utilization Group Study – Part Va (HUGS Va): design, methods and baseline data. Haemophilia, 17(5), 729-736. doi: 10.1111/j.1365-2516.2011.02595.x.

Palavras-Chave #HEMOFILIA #CALIDAD DE VIDA #Haemophilia #Quality of life
Tipo

info:eu-repo/semantics/bachelorThesis

info:eu-repo/semantics/submittedVersion