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ID
Source
Brief title
Health condition
Systemic sclerosis, risk perception, illness perception
Sponsors and support
Intervention
Outcome measures
Primary outcome
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
Secondary outcome
not applicable
Background summary
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
Study design
one time point
Intervention
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.
Inclusion criteria
Patients included should be diagnosed with SSc > 1 year and < 2 year prior to study entry with an age of 18-55 years. Included patients have to fulfill the ACR/EULAR 2013 criteria (American College of Rheumatology/ European League against Rheumatism), have to have completed a second visit in the care program and have to have started with any kind of medication (prescribed by the rheumatologist) after the first visit. Informed consent will be obtained via written forms .
Exclusion criteria
Patients with serious comorbidities, patients that are medically trained and/or work in a medical setting, and patients with insufficient understanding of the Dutch language will be excluded
Design
Recruitment
Followed up by the following (possibly more current) registration
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Other (possibly less up-to-date) registrations in this register
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In other registers
| Register | ID |
|---|---|
| NTR-new | NL7278 |
| NTR-old | NTR7511 |
| CCMO | NL67104.058.18 |