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Functional disability and its predictors in systemic sclerosis: a study from the DeSScipher project within the EUSTAR

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Summary

Systemic sclerosis (SSc) patients report dyspnea, pain, digital ulcers, muscle weakness, and GI symptoms as key drivers of disability. These patient-reported factors significantly correlate with higher disability scores, impacting quality of life.

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Area of Science:

  • Rheumatology
  • Scleroderma Research
  • Patient-Reported Outcomes

Background:

  • Systemic sclerosis (SSc) is a complex autoimmune disease with multisystem manifestations.
  • These manifestations significantly impact patients' quality of life and functional status.
  • Understanding factors contributing to disability is crucial for effective patient management.

Purpose of the Study:

  • To identify patient-reported factors associated with disability in systemic sclerosis (SSc).
  • To analyze the relationship between various clinical symptoms and disability scores in SSc patients.
  • To compare patient perceptions of disability with physician-focused objective measures.

Main Methods:

  • Analysis of data from the prospective DeSScipher cohort of SSc patients.
  • Utilized the Scleroderma Health Assessment Questionnaire (SHAQ) to assess disability.
  • Employed multiple linear regression to identify factors associated with SHAQ scores.

Main Results:

  • A total of 944 SSc patients were included, with mean SHAQ and HAQ scores of 0.87 and 0.92, respectively.
  • Key factors associated with higher SHAQ scores included dyspnea (NYHA class II-IV), fibromyalgia, muscle weakness, digital ulcers, and gastrointestinal symptoms.
  • Patient-reported symptoms like dyspnea and gastrointestinal issues were significant predictors of disability.

Conclusions:

  • SSc patients identify dyspnea, pain, digital ulcers, muscle weakness, and gastrointestinal symptoms as primary contributors to their disability.
  • These patient-reported factors are critical for understanding the lived experience of disability in SSc.
  • There is a divergence between patient-perceived disability factors and physician-emphasized objective measures.