Pino MMM, Trejos HAM, Orozco OJM

Language: Spanish
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ABSTRACT

Introduction: The progression of motor symptoms, 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 quality of life related to health in patients with Huntington's disease and their caregivers of the Magdalena Department. Methods: We performed a descriptive cross-sectional study with a control group. By purposive non-probability sampling 87 patients were selected with genetic testing for Huntington's disease and their caregivers of first grade between 19 and 88 years old. We used the Unified Huntington’s Disease Rating Scale and the World Health Organization Quality-of-Life Scale (WHOQOL-BREF) which assesses four areas: physical health, psychological health, social relationships and environment. Descriptive data analysis, nonparametric statistics and tabulation in SPSS version 20 was performed. Results: We found an statistically significant differences in the perception of quality of life and satisfaction with health status in the group of patients with Huntington's disease compared with the group of caregivers (p=0.00) and the control group (p=0.00). The most affected areas of quality of life in patients were the social relations 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, integral and valid evaluation of satisfaction with the health and welfare of patients and their families.