Illness perceptions, risk perceptions and worries in patients with early systemic sclerosis: A focus group study

Area of Science:

• Rheumatology
• Psychology
• Medical Sociology

Background:

• Systemic sclerosis (SSc) is a chronic autoimmune disease characterized by fibrosis, vasculopathy, and auto-immunity.
• Understanding patient perceptions of illness and risk is crucial for effective management, especially in early stages.
• Early diagnosis may influence how patients perceive their condition and its impact on their lives.

Purpose of the Study:

• To explore illness perceptions, risk perceptions, and worry in patients with recently diagnosed systemic sclerosis (SSc).
• To determine if early diagnosis in a mild disease stage impacts patients' lives.
• To investigate the association between disease severity and illness/risk perceptions.

Main Methods:

• Focus group discussions and questionnaires were used to assess illness perceptions, risk perceptions, and worry in SSc patients diagnosed within two years.
• Patients were asked to draw their disease to visually represent their perceptions.
• Disease severity was assessed using physician global assessment.

Main Results:

• Key illness perception dimensions identified were personal control, concern, and consequences.
• Patients reported numerous symptoms, low personal control, and significant worry about the future, irrespective of disease severity.
• Drawings highlighted the impact of SSc on daily life and psychological well-being; illness perceptions varied widely and did not correlate with disease severity.

Conclusions:

• Early systemic sclerosis diagnosis significantly affects patients' lives, even when the disease is not severe.
• Patient-reported experiences, including worry and perceived impact, are critical aspects of living with early SSc.
• Illness perceptions are highly individualized and not solely dictated by objective disease severity in early SSc.