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Related Experiment Videos

Development and validation of a self-administered systemic sclerosis questionnaire (SySQ).

J Ruof1, P Brühlmann, B A Michel

  • 1Rheumaklinik und Institut für Physikalische Medizin, Universitätsspital, Zürich, Switzerland.

Rheumatology (Oxford, England)
|July 13, 1999
PubMed
Summary

A new Systemic Sclerosis Questionnaire (SySQ) effectively measures symptoms and functional limitations in scleroderma patients. This reliable tool aids in clinical research and patient care.

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Area of Science:

  • Rheumatology
  • Clinical Assessment
  • Patient-Reported Outcomes

Background:

  • Systemic sclerosis (SSc), or scleroderma, is a chronic autoimmune disease characterized by widespread fibrotic changes.
  • Assessing the impact of SSc on patients' daily lives requires condition-specific, reliable measurement tools.
  • Existing measures may not comprehensively capture the diverse symptoms and functional limitations experienced by SSc patients.

Purpose of the Study:

  • To develop and validate a self-administered questionnaire, the Systemic Sclerosis Questionnaire (SySQ).
  • The SySQ aims to assess condition-specific functional limitations and symptoms in individuals with systemic sclerosis.
  • To ensure the questionnaire is a reliable and valid measure for SSc patients.

Main Methods:

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  • An initial item pool was generated through open patient interviews.
  • A preliminary questionnaire was developed and administered to 62 systemic sclerosis patients.
  • Factor analysis, internal consistency, and test-retest reliability analyses were performed. Associations with clinical and laboratory features were examined using Spearman's rank correlation and Wilcoxon's rank sum test.

    • Main Results:

    • The final SySQ comprises 32 items across 12 scales: pain, stiffness, coldness, complex functions, hand strength, rising, walking, shortness of breath, upper airway symptoms, eating, swallowing, and heartburn/regurgitation.
    • Internal consistency for the scales ranged from 0.73 to 0.93.
    • Test-retest reliability coefficients ranged from 0.73 to 0.93 (P < 0.001), indicating good reliability. Scales correlated with functional impairments but less so with morphological changes.

    Conclusions:

    • The Systemic Sclerosis Questionnaire (SySQ) is a valid and reliable measure for assessing SSc symptoms and functional limitations.
    • The SySQ's individually applicable scales cover a broad range of general and organ-specific issues.
    • Further validation for measuring change over time is recommended before widespread use in clinical, health services, and epidemiological research.