Calidad de vida en personas pre sintomáticas con riesgo de la enfermedad de Huntington en el departamento del Atlántico
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Fecha
2021
Autores
Andrea, Caro
Guerra, Stefanny
Fontalvo, Keyly
Mendoza, María
Rivera, Luisa
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Ediciones Universidad Simón Bolívar
Facultad de Ciencias de la Salud
Facultad de Ciencias de la Salud
Resumen
La progresión de los síntomas motores, cognitivos, psiquiátricos, conductuales y funcionales de la enfermedad de Huntington puede conducir a un deterioro cognitivo en la calidad de vida de los pacientes y sus cuidadores. Objetivo: Explicar la calidad de vida relacionada con la salud de pacientes asintomáticos en riesgo de enfermedad de Huntington y cuidadores que viven en el Departamento del Atlántico. Método: Estudio de grupo comparativo descriptivo utilizando muestreo no estocástico estimado, 296 sujetos y cuidadores primarios de 18 a 80 años, utilizando una escala uniforme (UHDRS) (Huntington Study Group, 1996), SF36 Rating Scale calidad de vida Cuatro áreas: salud física , salud psicológica, relaciones sociales y medio ambiente. El análisis de datos tabulares descriptivos no paramétricos se realizó en SPSS versión 20. Resultados: Se encontró una diferencia estadísticamente significativa en la calidad de vida y satisfacción con la salud de los pacientes sintomatológicos en riesgo de Huntington en comparación con los cuidadores (p = 0,00). Control (p = 0,00). Las áreas más afectadas por la calidad de vida de los participantes fueron las relaciones sociales y el medio ambiente. Conclusión: Debido a la complejidad de los signos y síntomas de la enfermedad de Huntington, los estudios de calidad de vida proporcionan una evaluación más completa, integral y eficaz de la satisfacción y el bienestar de los pacientes asintomáticos y sus familias.
The progressive nature of the motor, cognitive, psychiatric, behavioral and functional symptoms of Huntington's disease can cause a deterioration in the perception of the quality of life of patients and their caregivers. Objective: To describe the health-related quality of life in presymptomatic patients at risk of Huntington's disease and resident caregivers in the Department of Atlántico. Methods: Descriptive study with comparison group using an intentional non-probabilistic sampling, 296 subjects and first-degree caregivers between 18 and 80 years of age were selected, using the unified scale (UHDRS) (Huntington study group, 1996) and the quality scale of life SF36 that evaluates four areas: physical health, psychological health, social relations and environment. Descriptive data analysis, non-parametric statistics and tabulation were performed in SPSS Version 20. Results: Statistically significant differences were found in the perception of quality of life and satisfaction with health status in the group of presymptomatic patients at risk of Huntington's disease compared to the group of caregivers (p = 0.00) and the group control (p = 0.00). The most affected areas of the quality of life in the participants were social relationships and the environment. Conclusions: Due to the complexity of the signs and symptoms of Huntington's disease, the study of quality of life provides a more comprehensive, comprehensive and valid evaluation of satisfaction with the health and well-being of presymptomatic patients and their families.
The progressive nature of the motor, cognitive, psychiatric, behavioral and functional symptoms of Huntington's disease can cause a deterioration in the perception of the quality of life of patients and their caregivers. Objective: To describe the health-related quality of life in presymptomatic patients at risk of Huntington's disease and resident caregivers in the Department of Atlántico. Methods: Descriptive study with comparison group using an intentional non-probabilistic sampling, 296 subjects and first-degree caregivers between 18 and 80 years of age were selected, using the unified scale (UHDRS) (Huntington study group, 1996) and the quality scale of life SF36 that evaluates four areas: physical health, psychological health, social relations and environment. Descriptive data analysis, non-parametric statistics and tabulation were performed in SPSS Version 20. Results: Statistically significant differences were found in the perception of quality of life and satisfaction with health status in the group of presymptomatic patients at risk of Huntington's disease compared to the group of caregivers (p = 0.00) and the group control (p = 0.00). The most affected areas of the quality of life in the participants were social relationships and the environment. Conclusions: Due to the complexity of the signs and symptoms of Huntington's disease, the study of quality of life provides a more comprehensive, comprehensive and valid evaluation of satisfaction with the health and well-being of presymptomatic patients and their families.
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Palabras clave
Enfermedad de Huntington, Calidad de vida, Cuidador, Huntington's disease, Quality of life, Caregivers