The Impact of Illness Perceptions on Health Related Outcomes in Patients With Lupus and Systemic Sclerosis
Condition: Lupus Erythematosus, Systemic; Scleroderma, Systemic
MeSH terms: Lupus Erythematosus, Systemic; Scleroderma, Systemic; Scleroderma, Diffuse
Study type: Observational

Summary: 
      This research project has the overall objective to investigate the direction of the
      associations between illness perceptions, their influencing factors and health-related
      outcomes. Moreover, the investigators want to look at the direction of the associations
      between illness perceptions and health related outcomes such as psychological and physical
      functioning in patients with Systemic Lupus Erythematosus (SLE) and Systemic Sclerosis (SSc).
      The investigators want to know whether the outcome variables anxiety, depression, physical
      (dis) functioning are influenced by illness perceptions or vice versa. Not only the patients'
      illness perceptions but also the illness perceptions of the General Practitioners (GP) and
      rheumatologists will be investigated. The researchers want to know if the doctors'
      perceptions have an impact on the physical and psychological functioning of the patient or
      vice versa. Much research in the field of illness perceptions is cross-sectional in nature
      which means that the direction of the relationships between variables is not known.
    

Detailed description: 
      This is a single center academic study at two timepoints with an interval of 12 months. The
      data collection includes demographic variables, patient-reported variables, clinical
      variables and healthcare professionals-reported variables. All SSc and SLE patients who meet
      the inclusion criteria and are monitored by the rheumatology consultation in the University
      Hospitals Leuven will be contacted to participate in the study. Patients will be informed of
      the purpose of the study and what is expected of them. If they agree to participate they will
      also be asked to sign the Informed Consent form to send together with the completed
      questionnaire by mail.

      After the patient gives his/her agreement to participate his/ her GP and rheumatologist will
      be asked to fill out the Revised Illness Perception Questionnaire for Healthcare
      Professionals (IPQ-R HP). This is a questionnaire that measures the perception of the doctor
      about the disease condition of their patient.

      Data will be collected and kept by the investigator for analysis after complete coding. The
      obtained data will be analyzed using statistical methods.

      With this study the investigators want to give an answer on 4 research questions:

        1. Are there differences in perceptions between GP's and rheumatologists?

        2. What is the direction of the associations between the illness perceptions of the
           physicians and patients?

        3. What is the direction of the associations between the illness perceptions of a patient
           with SLE or SSc and psychological and physical functioning?

        4. What is the direction of the associations between the illness perceptions of the
           physician and the psychological and physical functioning of the patient?
    

Intervention name(s): Questionnaires
Intervention type(s): Other
Intervention description(s): Questionnaires will be provided to patients
Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Firstly a list will be created of all patients with lupus and systemic sclerosis who are in
        follow-up at the reumatology department in UZ Leuven. Afterwards all patients who fulfill
        the inclusion criteria will be selected. The patients who are included will be informed by
        mail and they will be asked to participate. When they agree for participating then they
        will be asked to complete an informed consent form.

        Hereafter the general practitioner and rheumatologist will be contacted to complete the
        IPQ-R HP (an illness perception questionnaire for Healthcare professionals)
      
Keywords: illness perceptions