Polymyalgia Rheumatica (PMR) Special Interest Group at OMERACT 11: outcomes of importance for patients with PMR

We worked toward developing a core outcome set for clinical research studies in polymyalgia rheumatica (PMR) by conducting (1) patient consultations using modified nominal group technique; (2) a systematic literature review of outcome measures in PMR; (3) a pilot observational study of patients presenting with untreated PMR, and further discussion with patient research partners; and (4) a qualitative focus group study of patients with PMR on the meaning of stiffness, using thematic analysis. (1) Consultations included 104 patients at 4 centers. Symptoms of PMR included pain, stiffness, fatigue, and sleep disturbance. Function, anxiety, and depression were also often mentioned. Participants expressed concerns about diagnostic delay, adverse effects of glucocorticoids, and fear of relapse. (2) In the systematic review, outcome measures previously used for PMR include pain visual analog scores (VAS), morning stiffness, blood markers, function, and quality of life; standardized effect sizes posttreatment were large. (3) Findings from the observational study indicated that asking about symptom severity at 7 AM, or "on waking," appeared more relevant to disease activity than asking about symptom severity "now" (which depended on the time of assessment). (4) Preliminary results were presented from the focus group qualitative study, encompassing broad themes of stiffness, pain, and the effect of PMR on patients' lives. It was concluded that further validation work is required before a core outcome set in PMR can be recommended. Nevertheless, the large standardized effect sizes suggest that pain VAS is likely to be satisfactory as a primary outcome measure for assessing response to initial therapy of PMR. Dissection of between-patient heterogeneity in the subsequent treatment course may require attention to comorbidity as a potential confounding factor

The impact of illness perceptions on health outcomes in patients with multisystem diseases

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 169nrpages: 178status: publishe

Patients' perceptions of their rheumatic condition: why does it matter and how can healthcare professionals influence or deal with these perceptions

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Modifiable correlates of illness perceptions in adults with chronic somatic conditions: A systematic review

When individuals become ill, they want to understand and give meaning to their illness. The interpretation of this illness experience, or illness perception, is influenced by a range of individual, contextual, and cultural factors. Some of these factors may be modifiable by nursing interventions. The purpose of this systematic review was to investigate which modifiable factors were correlated with illness perceptions across studies of adults with different chronic somatic diseases. Using search terms tailored to each of four electronic databases, studies retrieved were reviewed by two independent evaluators, and each relevant article was assessed for methodological quality. Results were standardized by calculating correlation coefficients. Fifteen papers on illness perceptions in a variety of chronic diseases met the inclusion criteria. All used standardized measures of illness perceptions. We identified five groups of modifiable correlates of illness perceptions: illness-related factors, psychosocial factors, medication beliefs, information provision and satisfaction with information received, and quality of care. Our findings add to the knowledge of modifiable factors correlated with illness perceptions, including the importance of illness-related factors and psychosocial factors such as anxiety and depression. Knowledge of these correlates can facilitate understanding of patients' illness perceptions and might be useful in tailoring patient education programs.status: publishe

Prospective associations between illness perceptions and health outcomes in patients with systemic sclerosis and systemic lupus erythematosus: a cross-lagged analysis

Objective: Perceptions of patients with SLE and SSc are strongly associated with physical and psychological outcomes. This interplay is not yet fully understood. Therefore, the aim of this study was to explore the prospective associations between illness perceptions and depressive symptoms, anxiety, perceived health status and disease activity in SLE and SSc patients. Methods: Patients with SLE and SSc from a single-centre university hospital participated in a longitudinal study spanning 1 year. At both time points, participants completed the revised Illness Perception Questionnaire; Hospital Anxiety and Depression Scale for measuring depressive symptoms and anxiety; The EuroQol five-dimensions with 5 response levels for perceived health status; and disease activity was recorded. The directionality of the associations was investigated using cross-lagged path analysis. Results: A total of 128 SLE and 113 SSc patients with a mean (s.d.) age of 46.28 (14.97) and 60.17 (10.82) years, respectively, and mean (S.D.) disease duration of 13.90 (9.31) and 8.48 (9.14) years, respectively, participated. In SLE, more depressive symptoms, more anxiety and worse perceived health status predicted a relative decrease in illness coherence 1 year later. More severe perceived consequences predicted a relative decrease in perceived health status. The perception of a more chronic time course predicted an increase in depressive symptoms. In SSc, reporting more depressive symptoms and more anxiety predicted a relative decrease in illness coherence. A good perceived health status and less reporting of depressive symptoms predicted a relative decrease in perceived consequences. Conclusion: Evidence was obtained for reciprocal pathways between health outcomes and illness perceptions, although the predominant direction of effects was found to be from health outcomes to illness perceptions. Trial registration: ClinicalTrials.gov, http://clinicaltrials.gov, NCT02655640.status: publishe

Artsen hebben uiteenlopende percepties over patiënten met systeemlupus en systeemsclerose

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Validation of a manual ability questionnaire in patients with systemic sclerosis.

OBJECTIVE: To adapt and validate a manual ability questionnaire, the ABILHAND, developed through the Rasch methodology in patients with systemic sclerosis (SSc). METHODS: The original version of the ABILHAND, which includes 81 manual daily activities, was presented to 156 patients with SSc. They were asked to provide their perceived difficulty in performing each manual activity on a 3-level scale: impossible, difficult, or easy. Items were selected from well-established psychometric criteria. The patients were reassessed 1 month later to test the reproducibility. Concomitantly, they were clinically evaluated for their disease activity/severity, and their functional ability was tested with the Health Assessment Questionnaire (HAQ). RESULTS: The 26 selected items defined a unidimensional and linear measure of manual ability and showed a continuous progression in their difficulty. The item difficulty hierarchy was invariant across 12 patient-related factors and the manual ability score was reproducible over time. Finally, the manual ability was significantly poorer in SSc patients with more severe disease, and was negatively correlated with the HAQ score (rho = -0.733). CONCLUSION: The SSc-adapted ABILHAND questionnaire is a reliable, valid, reproducible, linear, and unidimensional measure to assess and followup on the manual ability of patients with SSc; therefore, it could become a useful additional tool in clinical trials to assess treatment efficacy

Development and preliminary evaluation of the validity and reliability of a revised illness perception questionnaire for healthcare professionals

Background: Diverging perceptions between individual patients with somatic diseases and their healthcare professionals might cause problems in communication and decision-making. To date, no measurement tool is available to compare the illness perceptions between these two groups. The Revised Illness Perception Questionnaire (IPQ-R) is a validated, widely used instrument in many patient populations with somatic conditions. The aim of this study was to adapt the IPQ-R to a healthcare professional’s version (IPQ-R HP) and to perform a preliminary evaluation of its validity and reliability. Methods: After adaptation of the IPQ-R HP, 17 doctors from 3 general hospitals and 9 head nurses from a university hospital evaluated the face and content validity of the IPQ-R HP. The results were quantified using the content validity index (CVI) and a modified kappa index (k*). For the reliability measurements a group of nurses from 4 nursing wards participated at 2 time points with an interval of 4 weeks. Internal consistency and test-retest reliability were calculated. Results: Twenty-eight of the 38 items demonstrated excellent content validity and four items showed good content validity. Four items had a sufficient k* and two items had a low CVI. The average CVI of the 7 dimensions ranged from 0.66 to 0.89. The Cronbach’s alpha scores for the seven dimensions, intraclass coefficients and effect size estimates were acceptable. Conclusions: This preliminary evaluation of the IPQ-R HP shows an acceptable to good validity and reliability. Further exploration of the psychometric properties of this questionnaire in a large cohort of healthcare professionals is warranted.status: publishe