Parniyan Razieh, Pasyar Nilofar, Rambod Masoume, Momennasab Marzieh, Nazarinia Mohammadali
Student Research Committee of Shiraz University of Medical Sciences, Shiraz University of Medical Sciences, Shiraz, Iran.
Community Based Psychiatric Care Research Center, Department of Nursing, School of Nursing and Midwifery, Shiraz University of Medical Sciences, Shiraz, Iran.
J Educ Health Promot. 2024 Jan 22;12:440. doi: 10.4103/jehp.jehp_1690_22. eCollection 2023.
Scleroderma is a rare disease with complex disorders. It affects the quality of life with severe impacts on the skin and extensive complications in the internal organs, and does not have a definitive treatment. This study aimed to investigate the effect of a self-management program on the quality of life of patients with scleroderma.
This was a clinical trial in which 54 patients with scleroderma were randomly divided into two groups of 27 each (experimental and control groups). The data were collected using the Systemic Sclerosis Questionnaire. A self-management program was sent to the experimental group via a mobile phone application (WhatsApp) every day for three months. Statistical analysis was performed in Statistical Package for the Social Sciences V21.
The Wilcoxon signed-rank test showed that the average overall quality of life score of the experimental group showed a significant increase after the implementation of the program ( value: 0.00). The average overall quality of life score of the control group also significantly declined after the intervention ( value: 0.00). The Mann-Whitney U test revealed that there was no significant difference in the overall quality of life score of the two groups before the intervention ( value: 0.31); however, after the implementation of the self-management program, a significant difference was observed between the two groups ( value: 0.00).
According to the results, the self-management program can help improve the quality of life of patients with scleroderma.
硬皮病是一种伴有复杂病症的罕见疾病。它会影响生活质量，对皮肤造成严重影响，并引发内脏广泛并发症，且尚无确切的治疗方法。本研究旨在调查自我管理项目对硬皮病患者生活质量的影响。
这是一项临床试验，54例硬皮病患者被随机分为两组，每组27例（实验组和对照组）。使用系统性硬化症问卷收集数据。通过手机应用程序（WhatsApp）每天向实验组发送自我管理项目，持续三个月。在社会科学统计软件包V21中进行统计分析。
Wilcoxon符号秩检验显示，实验组在实施该项目后平均总体生活质量得分显著提高（值：0.00）。干预后对照组的平均总体生活质量得分也显著下降（值：0.00）。Mann-Whitney U检验显示，干预前两组的总体生活质量得分无显著差异（值：0.31）；然而，在实施自我管理项目后，两组之间观察到显著差异（值：0.00）。
根据结果，自我管理项目有助于提高硬皮病患者的生活质量。
