Attitudes towards risk in systemic sclerosis

Rationale: Being diagnosed with Systemic Sclerosis (SSc) will evoke thoughts about the disease. For physicians, it is almost impossible to tell a patient what his/her disease course will be. The disease is unpredictable, it may show a chronic but mild disease course, but also in a considerable proportion of patients life-threatening complications occur.

Objective: To explore illness perception, risk perceptions and worry in patients with Systemic Sclerosis

Study design: A combined qualitative and quantitative design, using questionnaires, a focus group and letting patients draw their disease
Study population: From the Leiden Combined Care in Systemic Sclerosis cohort six SSc patients with a disease duration of 1 to 2 years, will be included. Patients should have completed at least two visits in the care program.

Methods: The brief illness perception questionnaire (BIPQ) and patient drawings will be used to assess illness perceptions, risk perceptions and worries are examined by questionnaires adapted from Cameron and Diefenbach, 2001 (1). For further in-depth exploration of illness perceptions, risk perceptions and worry, a focus-group will be organised with 6 patients with recently diagnoses systemic sclerosis.

Main study parameters/endpoints: Results about the assessment of illness perceptions, risk perceptions and worry, their interrelations and associations with sociodemographic and clinical characteristics will mainly be descriptive, as the character of this study is exploratory

one time point

The brief illness perception questionnaire (BIPQ) and patient drawings will be used to assess illness perceptions, risk perceptions and worries are examined by questionnaires adapted from Cameron and Diefenbach, 2001 (1). For further in-depth exploration of illness perceptions, risk perceptions and worry, a focus-group will be organised with 6 patients with recently diagnoses systemic sclerosis.