Seher Arat

The Belgian Systemic Sclerosis Cohort: Correlations Between Disease Severity Scores, Cutaneous Subsets, and Autoantibody Profile

Objective. To report baseline and followup data on the first 438 patients with systemic sclerosis (SSc) included in the Belgian Systemic Sclerosis Cohort. Methods. According to LeRoy and Medsger’s classification, 73 patients with limited SSc (lSSc), 279 with limited cutaneous SSc (lcSSc), and 86 with diffuse cutaneous SSc (dcSSc) were included. History was collected and clinical examination, blood tests, and paraclinical investigations were repeated. The Disease Activity Score (DAS) and Disease Severity Score (DSS) of several organ systems were computed. An organ system was considered to demonstrate SSc if the corresponding DSS was ≥ 1. Results. At baseline, patients with dcSSc had more general, joint/tendon, muscle, gastrointestinal, and kidney involvement. Mean DLCO was below normal in patients with lSSc, indicating unsuspected lung involvement. Patients with anti-Scl-70 had more vascular, skin, joint/tendon, and lung involvement. Patients with anti-RNA polymerase III had more skin and joint/tendon involvement compared to patients with anticentromere. Time to death was statistically shorter for patients with dcSSc. New-onset lung disease was the most common complication over time. No changes in DAS were observed. By contrast, the general and the skin DSS worsened in patients with lcSSc and lSSc, respectively. Fifteen percent of patients with lSSc shifted to lcSSc at Month 30, but neither serology nor capillaroscopy findings at baseline were helpful in identifying those at risk. Conclusion. Our data indicate that the DSS can be used to define organ involvement in SSc. Differences can be seen between subsets classified not only according to cutaneous subtypes but also to autoantibody profile.

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.

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.

Illness representations of systemic lupus erythematosus and systemic sclerosis: a comparison of patients, their rheumatologists and their general practitioners

Objective Discrepancies in illness representations between patients and physicians result in treatment difficulties, decreased well-being of patients and misunderstandings and disrupted communication. Hence, the objective of this study was to compare illness perceptions of individual patients with systemic lupus erythematosus (SLE) and systemic sclerosis (SSc), their rheumatologists and their general practitioners (GPs) and explore potential differences. Methods This study has a cross-sectional design. Patients with SLE and SSc, who were followed at the rheumatology department of the University Hospitals Leuven (Belgium), completed the revised Illness Perception Questionnaire which measures patients’ perceptions of their condition and captures nine dimensions. Physicians completed the Revised Illness Perception Questionnaire for Healthcare Professionals which consists of seven dimensions and measures perceptions of the healthcare professional regarding the disease of their patients. Intraclass correlation was performed to examine relationships between pairs of respondents; Cohen’s d was used for estimating the magnitude of the difference. Results Questionnaires were sent to 284 patients of whom 241 (113 SSc and 128 SLE patients) were included. Five rheumatologists and 160 GPs participated. For both diseases, positive correlations were found for ‘consequences’, ‘illness coherence’ and ‘emotional representations’ among patients, rheumatologists and GPs. GPs scored higher on the ‘consequences’ of these diseases for the patient (d=0.71 for SLE; d=0.80 for SSc). Differences between rheumatologists and GPs were small for SSc and moderate to large for ‘consequences’ (d=0.56) and ‘timeline acute/chronic’ (d=0.95) in SLE with higher scores for GPs. Conclusions For both diseases and among the three groups, significant correlations are detected for the dimensions ‘consequences’, ‘illness coherence’ and ‘emotional representations’. Differences between rheumatologists and GPs were mainly detected in the case of SLE patients. This can have implications for the collaboration between these two groups of physicians in daily clinical practice. Clinical trial registration NCT02655640; Pre-results.

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

Abstract 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.

Diverging illness perceptions between physicians about patients with systemic lupus erythematosus and systemic sclerosis: a vignette-based study

Systemic lupus erythematosus (SLE) and systemic sclerosis (SSc) are complex chronic auto-immune diseases characterized by multiple organ involvement, comorbidities, and complications. This complexity results in a need for a multidisciplinary management and treatment of SLE and SSc by physicians from a number of medical disciplines, all of who may have different perceptions concerning the condition of a particular patient. The aim of this study was to explore differences in physicians’ perceptions on the illness of SLE and SSc patients. Physicians from nine disciplines working at three hospitals in Belgium completed illness perception questionnaires for healthcare professionals based on four patient vignettes, i.e., two vignettes per disease (SLE-SSc). Statistical analysis was carried out by a k-means clustering technique for clustering physicians according to their illness perceptions. Fifty physicians, 62% men with a mean age of 42.8 years (SD 11.3) and mean working experience of 12.7 years (SD 11.6), participated. For each disease, three clusters of physicians with different scores in illness perceptions were identified. For SLE, these clusters were specified as the ‘optimistic’ group, the ‘realistic’ group, and the ‘overwhelming impact by disease’ group. For SSc, the clusters were characterized as the ‘optimistic’ group, the ‘realistic’ group, and the ‘skeptical’ group. We found divergent illness perceptions across physicians of the same and other disciplines. Our study yielded three clusters of physicians per disease with a large variability in illness perceptions. Further studies should focus on the factors that determine these differences and their consequences for patient care.

THU0594-HPR The Determinants of Illness Perceptions in Patients with Acute or Chronic Somatic Diseases: A Mixed-Method Review

Background In order to understand and respond to the difficulties presented by illness, patients construct their own “common sense” cognitive model. This is a way to conceptualize and give meaning to an illness and its consequences, assumed to be influenced by characteristics of both the individual and the particular illness. Objectives To provide an overview of the available literature on the determinants of illness perceptions in patients with acute or chronic somatic diseases in order to inform us in our planned research studying illness perceptions in rheumatic diseases. Methods A systematic electronic literature search was conducted using the following databases: Medline (via Pubmed), Embase (via Embase.com), PsycINFO, Cinahl and Invert, complemented by a manual search on reference lists of the included papers. Searches were limited to articles in English, Dutch, French and German published from January 1980 to December 2012. Two authors independently selected studies for inclusion and assessed methodological quality using validated checklists. Results Thirty-one studies met our inclusion criteria and were hence included in the synthesis (8 qualitative studies, 1 case-control & 22 cohort studies). The determinants found in the papers with qualitative design were culture (n=6) and gender (n=2). The determinants in the quantitative studies were culture (n=8);personal factors such as personality (n=4) and symptom perception (n=1) physical factors such as disability (n=1) and physical functioning (n=1); and illness experience (i.e. personal illness experience (n=3), information source and coping style (n=1) and experiences of disease among relatives and friends (n=1)). The studies, which were conducted in different countries and settings, concerned several diseases. Most but not all studies reported differences in illness perceptions for the determinant culture. In the studies that corrected for educational attainment, no differences were found between different ethnicities. The second determinant, age, revealed that older participants believed genetics to be the cause of their disease. They perceived less control over their illness than younger patients. For personality, patients with type D personality experienced their illness less controllable and were more concerned about their illness than non-type D patients. For the determinant physical functioning, a 6-year longitudinal study about disability in osteoarthritis revealed that disability as result of this disease was predicted by less perceived control and perceptions of stronger consequences at baseline. Illness experience, finally, was related with a stronger belief in control and less severe perceived consequences. Conclusions Patients who seek care for an acute or chronic illness may have different perceptions and understanding of their disease than does the health care professional.These differences have an influence on the patient-practitioner communication. This review might guide us in our future research on illness perceptions in patients with acute or chronic rheumatic diseases.Research like this is needed to avoid misunderstandings in the patient-practitioner encounter and enables optimal patient care. Disclosure of Interest : None declared DOI 10.1136/annrheumdis-2014-eular.3146