Effectiveness of a psychoeducational intervention on myositis patients' quality of life and well-being: a randomized controlled trial.

IF 3.5 2区 医学 Q2 GENETICS & HEREDITY Orphanet Journal of Rare Diseases Pub Date : 2024-11-01 DOI:10.1186/s13023-024-03426-0
Imma Armadans-Tremolosa, Maria Palacin-Lois, Angela Castrechini-Trotta, Susana Sanduvete-Chaves, Salvador Chacón-Moscoso, Albert Selva-O'Callaghan
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Abstract

Background: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Trial registration: NCT06300983.

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心理教育干预对肌炎患者生活质量和幸福感的影响:随机对照试验。
背景:肌炎是一种与健康相关的生活质量受损有关的罕见疾病。本报告介绍了一项评估改善肌炎患者生活质量和福祉的干预措施效果的研究:方法:联系了一个卫生区的所有肌炎患者。34 名符合条件的患者被随机分配到实验组(17 人)或对照组(17 人)。只对实验组患者进行心理教育干预,共5次,每次100分钟,重点是疾病与日常生活的关系。两组患者在干预前后两次使用了几种测量生活质量和幸福感的可靠工具:实验组患者在生活质量、幸福感和控制疾病的自我效能方面的后测得分均高于前测得分。在所研究的 70% 变量中,实验组的改善比对照组更明显。具体来说,在测试后的评估中,实验组比对照组更明显地减少了久坐,提高了对社会关系的满意度:这项随机对照试验在广泛人群中对肌炎患者进行了抽样调查,结果表明,心理教育干预对改善患者的生活质量、幸福感和控制疾病的自我效能非常有效:试验注册:NCT06300983。
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来源期刊
Orphanet Journal of Rare Diseases
Orphanet Journal of Rare Diseases 医学-医学:研究与实验
CiteScore
6.30
自引率
8.10%
发文量
418
审稿时长
4-8 weeks
期刊介绍: Orphanet Journal of Rare Diseases is an open access, peer-reviewed journal that encompasses all aspects of rare diseases and orphan drugs. The journal publishes high-quality reviews on specific rare diseases. In addition, the journal may consider articles on clinical trial outcome reports, either positive or negative, and articles on public health issues in the field of rare diseases and orphan drugs. The journal does not accept case reports.
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