Orphanet Journal of Rare Diseases (Nov 2024)

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

  • Imma Armadans-Tremolosa,
  • Maria Palacin-Lois,
  • Angela Castrechini-Trotta,
  • Susana Sanduvete-Chaves,
  • Salvador Chacón-Moscoso,
  • Albert Selva-O’Callaghan

DOI
https://doi.org/10.1186/s13023-024-03426-0
Journal volume & issue
Vol. 19, no. 1
pp. 1 – 10

Abstract

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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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