SAT0434 Participation in systemic lupus erythematosus – a cross-sectional analysis of the lula-cohort in germany 2015
Authors: G. Chehab, J.G. Richter, R. Fischer-Betz, R. Brinks, B. Winkler-Rohlfing, M. Schneider
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> Participation of chronically ill patients can be permanently and severely impaired. In a heterogeneous disease like systemic lupus erythematosus (SLE), various influencing factors such as disease activity, damage, concomitant diseases, but also detrimental effects due to the psychological burden must be considered. <h3>Objectives</h3> Our objective was to assess the current state of participation in a representative sample of German patients with SLE and evaluate the impact of demographic and clinical factors. <h3>Methods</h3> The Lupus erythematosus long-term study (LuLa-Study), a nationwide longitudinal study among German Caucasian patients with SLE, is being conducted annually by a self-reported questionnaire since 2001. Inclusion criteria are a diagnosis of SLE and returning the completed paper questionnaire. Amongst others medication, comorbidities, health-related quality of life (HRQoL, Short-Form-12), and disease activity (Systemic Lupus Activity Measure) are surveyed. <sup>In the year 2015</sup> we additionally inquired about participation using the "Index zur Messung von Einschränkungen der Teilhabe" (IMET; Index for measuring limitations of participation) that was developed on the basis of the International Classification of Functioning, Disability and Health (ICF), as well as depression (Centre for Epidemiologic Studies Depression Scale), and pain coping (Pain Related Self statements scale). A multiple linear regression was run to predict overall impairment and impairment in the individual subdomains (dependent variables). Age, disease duration, number of comorbidities, pain, disease activity, catastrophizing, coping, depression, physical functioning, and physical and mental HRQoL were entered into our model as candidates for the independent variables. Variable selection was accomplished by a stepwise approach based on Akaike information criterion (AIC). <h3>Results</h3> The questionnaire was completed by 579 patients (response rate 89.2%). Only 48 (8.3%) reported no impairment of participation by their disease. Most limitations were reported in the domains 'stress and extraordinary strains' (56.3% reported moderate to high impairment) and 'sex life' (48.7%), whereas 'common activities of daily life' (21.1%) and 'close personal relationships' (26.5%) seemed to be limited less frequently. Depression, physical functioning, and physical and mental HRQoL predicted overall participation (F-test, p&lt;0.0001). Depression, physical functioning, and physical HRQoL predicted also most of the participation subdomains whereas age, disease duration, no. of comorbidities, disease activity, pain, and pain coping behaviour impacted only individual subdomains. <h3>Conclusions</h3> Limitations of participation are common in SLE patients and affect different areas of life. In order to improve participation, it is of great importance to maintain, respectively improve physical and mental quality of life, physical functioning, and depression. The direction of causality cannot be proved beyond reasonable doubt in this cross-sectional analysis. Additional longitudinal studies are necessary. <h3>Acknowledgements</h3> The LuLa-study is supported by unrestricted grants from GlaxoSmithKline and UCB Pharma. <h3>Disclosure of Interest</h3> G. Chehab Grant/research support from: GlaxoSmithKline and UCB Pharma for performing the LuLa-study., J. Richter Grant/research support from: GlaxoSmithKline and UCB Pharma for performing the LuLa-study., R. Fischer-Betz Grant/research support from: GlaxoSmithKline and UCB Pharma for performing the LuLa-study., R. Brinks: None declared, B. Winkler-Rohlfing: None declared, M. Schneider Grant/research support from: GlaxoSmithKline and UCB Pharma for performing the LuLa-study.