伊朗肌萎缩侧索硬化症患者的生活质量

Quality of Life of Amyotrophic Lateral Sclerosis Patients in Iran.

作者信息

Fathi Mohamad, Sedaghat Mastooreh, Ahadi Hasan

机构信息

Department of Health Psychology, Kish International Branch, Islamic Azad University, Kish Island, Iran.

Department of Psychology, South Tehran Branch, Islamic Azad University, Tehran, Iran.

出版信息

Med J Islam Repub Iran. 2023 Jul 5;37:76. doi: 10.47176/mjiri.37.76. eCollection 2023.

DOI:10.47176/mjiri.37.76

PMID:37600635

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10439694/

Abstract

BACKGROUND

Amyotrophic Lateral Sclerosis (ALS) is a rare disease that can bring different emotional, physical, and psychological burdens. This study aimed to investigate the quality of life in patients with ALS.

METHODS

This is a cross-sectional study. Fifty-two patients contributed in this study. The setting was an ALS clinic in Iran. A mixed method was used in this study. We applied a short form of the WHO Quality of Life questionnaire (WHOQOL) to measure the quality of life of patients. Also, all participants were interviewed through the semi-structured interview guide. To measure physical strength and functioning the Appel ALS Rating Scale (AALS) was employed in this study. To analyze the data, a two-tailed t-test and x2 test were used.

RESULTS

42.3% of the participants were female. The age of the participants ranged between 28 to 81 (mean=57.6). The disease duration ranged from 0.07 to 14 years (mean=1.8). The overall mean QOL was 58.7 (±8.1). The overall mean of the AALS score was 74.4 (±24.2). The results of the qualitative part of the study showed four psychosocial themes: (1) internal personality traits, communicating with friends and family; (2) religion and spirituality; (3) stress, mood changes, and difficult relationship; and (4) changes in lifestyle, work, leisure time and financial situation.

CONCLUSION

Despite recent advances, ALS is still one of the diseases for which there is no effective treatment. Paying attention to psychosocial issues in patients with ALS can play a very important role in increasing the quality of life of patients.

摘要

背景

肌萎缩侧索硬化症（ALS）是一种罕见疾病，会带来不同的情感、身体和心理负担。本研究旨在调查ALS患者的生活质量。

方法

这是一项横断面研究。52名患者参与了本研究。研究地点为伊朗的一家ALS诊所。本研究采用了混合方法。我们应用世界卫生组织生活质量问卷简表（WHOQOL）来测量患者的生活质量。此外，所有参与者都通过半结构化访谈指南接受了访谈。本研究采用阿佩尔ALS评定量表（AALS）来测量体力和功能。为分析数据，使用了双尾t检验和x²检验。

结果

42.3%的参与者为女性。参与者年龄在28至81岁之间（平均=57.6岁）。疾病持续时间为0.07至14年（平均=1.8年）。总体生活质量平均分为58.7（±8.1）。AALS评分的总体平均分为74.4（±24.2）。研究定性部分的结果显示了四个社会心理主题：（1）内在性格特质、与朋友和家人的交流；（2）宗教与精神性；（3）压力、情绪变化和困难的人际关系；（4）生活方式、工作、休闲时间和财务状况的变化。