Systemic sclerosis: patients' perceptions of their condition

Arthritis Rheum. 2003 Oct 15;49(5):689-96. doi: 10.1002/art.11385.


Objective: To examine patients' beliefs about systemic sclerosis (SSc) and to investigate the relationship between these beliefs, symptom report, and clinical and demographic variables.

Methods: A total of 49 patients (7 male, 42 female) with SSc underwent clinical examination and completed the Revised Illness Perception Questionnaire. This measure assesses beliefs about symptoms, chronicity or recurrence of the condition, consequences, personal and treatment control, illness coherence, perceived causes of the condition, and patients' emotional response to their condition.

Results: The symptoms patients most frequently associated with their SSc were stiff joints (79%), pain (75%), and fatigue (75%). The most commonly reported causes of SSc were stress (53%), altered immunity (49%), and chance or bad luck (46%). More than 96% of patients believed that their condition would be chronic and 78% believed that the condition had serious consequences on their lives. Patients with diffuse cutaneous SSc reported more significant consequences of the condition and less personal control of their SSc compared with patients with limited cutaneous disease. There were no significant differences in illness beliefs between patients with nonsevere and severe ischemia. Multiple regression analyses indicated that illness beliefs, in particular perceived consequences associated with the condition, accounted for a significant proportion of the variance in emotional response to the condition.

Conclusions: The beliefs held and symptoms experienced by patients with SSc are not ruled by disease subtype, skin score, functional ability, or severity of digital ischemia. This suggests patients' beliefs and emotional response are associated with the meaning they ascribe to their condition rather than its severity.

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Attitude to Health*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Patients* / psychology
  • Scleroderma, Systemic / diagnosis
  • Scleroderma, Systemic / physiopathology
  • Scleroderma, Systemic / psychology*
  • Self-Examination*
  • Severity of Illness Index
  • Surveys and Questionnaires