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Illness perceptions are mental models that individuals construct when facing an illness in order to make sense of their symptoms and medical conditions. These illness models can be very specific to the individual which means that patients with the same condition can have different perceptions regarding their illness. Nevertheless, consistent patterns are identified in the way individuals generate illness perceptions. The concept of illness perceptions has been introduced in the early 1980s by Leventhal and colleagues in the Common-Sense Model. This model posits that internal stimuli (e.g. symptom experience such as pain) and external stimuli (e.g. disease-related information from family or healthcare professionals) generate cognitive and emotional representations which guide the selection of coping procedures in order to eliminate and control potential or ongoing ‘illness threats’. Afterwards, there is an appraisal of these coping procedures in regulating physical and emotional outcomes. Literature, which is limited, states that physicians’ perceptions about illness are possible correlates of patients’ illness perceptions. No clear overview is available in the literature about these correlates of illness perceptions or about the perceptions of physicians or healthcare professionals regarding the illness of the patient. Also, some of these correlates can be determinants or outcomes of illness perceptions. For instance, in the case of anxiety: do patients view their illness more negatively because they are anxious, or do they become anxious because they consider their illness so severe and feel they have no control over it? This PhD project covers studies addressing the unknowns in literature in patients with systemic lupus erythematosus (SLE) and systemic sclerosis (SSc). Firstly, we identified variables that are associated with illness perceptions. We selected the modifiable correlates of illness perceptions because these variables are prone to change which means that they are modifiable with clinical interventions. We found factors such as medication beliefs, quality of care, illness-related factors, psychosocial factors and information provision and satisfaction. This overview is interesting because healthcare professionals can take this into account in their encounter with patients during patient education or counseling sessions. Secondly, in order to gather more information regarding physicians’ perceptions about SLE and SSc, we set up three studies. In the first study, we performed a preliminary validation of an instrument aimed to measure illness perceptions in healthcare professionals. The second study was a vignette-based study in which we investigated perceptions of physicians from different medical specialties, about SLE and SSc. We found diverse physician profiles based on their perceptions of SLE and SSc which was independent of the frequency of patient contact. In the third study, we examined perceptions of rheumatologists and general practitioners (GPs) about their own patients, this means patients they treat and care for. In the case of SSc, there were more commonalities in perceptions between rheumatologists and GPs and in the case of SLE more differences in illness perceptions. Thirdly, in the last study we analyzed the link between illness perceptions of SLE and SSc patients and health outcomes such as depressive feelings, anxiety, perceived health status and disease activity spanning one year. We investigated whether illness perceptions are predicted by health outcomes or vice versa. This study was important because almost all literature in illness perceptions in SLE and SSc has a cross-sectional design and assumes that illness perceptions predict health outcomes. In other words, that the direction of the associations goes from illness perceptions to health outcomes. The results of the latter study were that health outcomes such as depressive feelings, anxiety, perceived health status determine illness perceptions one year later. For SLE, we found that illness perceptions are predictors of perceived health status and depressive symptomatology over time. In sum, this PhD study gave more insight in the modifiable correlates of illness perceptions, the illness perceptions of physicians from various medical specialties and their patients, and uncovered the links between illness perceptions and health outcomes in patients with SLE and SSc. Now, we have more evidence for planning educational interventions for healthcare professionals and for designing clinical interventions for patients but additional research is necessary. Future research is needed on different aspects such as the further investigation of the psychometric properties of the illness perception questionnaire for health care professionals, an evaluation of the impact of divergent illness perceptions of physicians on the organization of care and an investigation of the impact of physicians’ illness perceptions on patient outcomes. Abbreviations 3 Chapter 1: General introduction 7 Chapter 2: Modifiable correlates of illness perceptions in adults with chronic somatic conditions: a systematic review 25 Chapter 3: Development and preliminary evaluation of the validity and reliability of a revised illness perception questionnaire for healthcare professionals 53 Chapter 4: Diverging illness perceptions between physicians about patients with systemic lupus erythematosus and systemic sclerosis: a vignette-based study 75 Chapter 5: Illness representations of systemic lupus erythematosus and systemic sclerosis:a comparison of patients, their rheumatologists and their general practitioners 95 Chapter 6: Prospective associations between illness perceptions and health outcomes in patients with systemic sclerosis and systemic lupus erythematosus: a cross-lagged analysis 113 Chapter 7 : General discussion 131 Acknowledgement-Personal Contribution-Conflicts of Interest statement 151 Summary-Samenvatting 155 Curriculum Vitae-List of publications 163 Dankwoord 169 nrpages: 178 status: published

Overall description of the four patient vignettes. (DOCX 12Â kb)