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SYSTEMIC SCLEROSIS RELATED CALCINOSIS: PATIENTS PROVIDE WHAT SPECIALISTS WANT TO LEARN.

A Christensen1, S Khalique2, S Cenac3

  • 1Tulane University School of Medicine, New Orleans, LA.

The Journal of the Louisiana State Medical Society : Official Organ of the Louisiana State Medical Society
|May 10, 2016
PubMed
Summary

Patients with systemic sclerosis (SSc) calcinosis shared insights on self-management and disease triggers. Their experiences are crucial for developing a patient-reported outcome measure (PROM) to guide SSc calcinosis research.

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Area of Science:

  • Rheumatology
  • Dermatology
  • Patient-Reported Outcomes

Background:

  • Calcinosis is a poorly understood, disabling manifestation of systemic sclerosis (SSc).
  • Limited knowledge exists regarding the natural history and effective management strategies for SSc-related calcinosis.

Purpose of the Study:

  • To develop a specific patient-reported outcome measure (PROM) for calcinosis in systemic sclerosis (SSc).
  • To facilitate future clinical research evaluating therapeutic effects on SSc-related calcinosis.

Main Methods:

  • Conducted focus groups and individual interviews with 23 SSc patients.
  • Employed an iterative inductive analysis of patient transcripts by multiple independent analysts.
  • Triangulated identified concepts to ensure comprehensive and meaningful data for PROM development.

Main Results:

  • Identified patient-reported concepts including self-management strategies and perceived links between calcinosis, trauma, Raynaud's phenomenon, and cold exposure.
  • Observed that calcinosis often presents early in SSc and persists throughout the disease duration.
  • Highlighted patient eagerness for self-management guidance and education.

Conclusions:

  • Patient insights and self-management behaviors offer valuable learning opportunities for healthcare professionals.
  • The identified concepts form the foundation for developing a SSc calcinosis-specific PROM.
  • Patients suggested a composite scale (pain, size, frequency, number, impairment) as a potential interim instrument.