Department of Social Psychology and Quantitative Psychology, PsicoSAO-Research Group in Social, Environmental, and Organizational Psychology, University of Barcelona, Barcelona, Spain.
Social Psychology and Quantitative Psychology Department, Faculty of Psychology, University of Barcelona, Barcelona, Spain.
Orphanet J Rare Dis. 2024 Nov 1;19(1):411. doi: 10.1186/s13023-024-03426-0.
Myositis is a rare disease associated with impaired health-related quality of life. A study evaluating the effectiveness of an intervention to improve the quality of life and well-being of myositis patients is presented.
All myositis patients in a health district were contacted. Thirty-four eligible patients were randomly assigned to the experimental (n = 17) or control (n = 17) group. A psychoeducational intervention of 5 100-min sessions focusing on the disease as related to daily life was conducted only in experimental patients. Several reliable tools to measure quality of life and well-being were administered twice, before and after the intervention, to both groups.
In the experimental group, post-test scores were higher than pre-test in quality of life, well-being, and self-efficacy to manage the disease. Improvements were more evident in the experimental group than controls in 70% of the variables studied. Specifically, sedentariness decreased and satisfaction with social relationships increased in the post-test evaluation to a greater degree in the experimental group than in controls.
This randomized controlled trial on a representative sample of myositis patients in an extensive population provides evidence indicating the effectiveness of a psychoeducational intervention for improving HRQoL, well-being, and self-efficacy to manage the disease.
NCT06300983.
肌炎是一种罕见的疾病，会影响患者的健康相关生活质量。本研究评估了一项旨在改善肌炎患者生活质量和幸福感的干预措施的效果。
联系了一个卫生区域内的所有肌炎患者。随机将 34 名符合条件的患者分配到实验组（n=17）或对照组（n=17）。仅对实验组患者进行了 5 次 100 分钟的心理教育干预，重点是与日常生活相关的疾病。在干预前后，两组均使用了多种可靠的工具来测量生活质量和幸福感。
实验组的后测得分高于前测，在生活质量、幸福感和自我效能感方面均有改善。实验组在 70%的研究变量中比对照组的改善更为明显。具体而言，实验组在静坐时间减少和对社会关系的满意度方面的改善程度大于对照组。
这项针对广泛人群中具有代表性的肌炎患者的随机对照试验提供了证据，表明心理教育干预可有效提高 HRQoL、幸福感和自我管理疾病的效能。
NCT06300983。
