评估青少年多发性硬化症患者的生活质量

Mona Ibrahim Mohamed, Nahed S. El-Naggar, Mohamed M. Fouad
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摘要

背景:与普通人和其他慢性病患者相比,患有多发性硬化症(MS)的青少年的健康相关生活质量(HRQoL)较低。本研究旨在评估青少年多发性硬化症患者的生活质量。研究设计 :描述性设计。研究地点本研究在艾因夏姆斯大学医院多发性硬化症科进行,该科有大量多发性硬化症青少年患者。研究对象 :50 名患有多发性硬化症的青少年。工具:第 1 种工具:结构式访谈问卷,包括人口统计特征。第 2 项工具:病历;第 3 项工具:青少年多发性硬化症生活质量(MSQOL)-54。结果:研究显示,74.0% 的青少年为女性,超过四分之一(28%)的青少年的家人有多发性硬化病史,大多数青少年(86.0%)的生活质量总分水平为一般。结论:研究中的大多数青少年的生活质量一般。建议为患有多发性硬化症的青少年提供持续教育培训计划和图解手册。需要进一步调查多发性硬化症对青少年患者家庭中照顾者生活质量的影响。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Assessment of Quality of Life for Multiple Sclerosis among Adolescents
Background: Adolescents with multiple sclerosis (MS) report lower health-related quality of life (HRQoL) as compared to general and other chronic disease populations. The aim of the study was to assess quality of life for multiple sclerosis among Adolescents. Research design : Descriptive design. Settings: This study was conducted in MS unit at Ain Shams University Hospital whereas; this unit has a large number of adolescences with MS. Subjects : A Purposive sample of 50 adolescents suffered from MS. Tools: 1 st tool; Structure interview questionnaire included demographic characteristics. 2 nd tool: medical record and 3 rd tool was Multiple Sclerosis Quality of Life for Adolescents (MSQOL)-54 . Results: the study revealed that (74.0%) were female, more than one quarter (28%) of them their families had history of multiple sclerosis disease and majority (86.0%) of them total score level of their quality of life was fair. Conclusion: the majority of studied adolescents had had fair quality of life. Recommendation: Provide continuous education training program and illustrative booklet for adolescents with MS. Further investigation is required to examine the impact of MS on the quality of life for caregivers within the families of adolescents affected by the disease.
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