An independent cross-sectional survey assessed systemic lupus erythematosus (SLE) disease and treatment burden. Variables included medication classes prescribed, disease activity, flare occurrences, treatment satisfaction, and validated measures of health-related quality of life (HRQoL), fatigue and work productivity. Of 886 eligible patients (mean age 41.3 years, 89% female), 515 completed the survey. One-third reported moderate-to-severe disease activity, and 31% had flared in the last 12 months. Higher severity of disease activity (moderate-to-severe) was associated with 2 medication classes prescribed and treatment regimens that included corticosteroids (CS) (both p < 0.0001). Patients receiving CS reported lower EQ-5D scores (p ¼ 0.0019) and higher fatigue levels (p < 0.001), and both patients (p ¼ 0.0019) and physicians (p ¼ 0.0001) were less likely to report satisfaction with treatment regimens including CS. Among responders eligible for work (n ¼ 456), severity of disease activity (moderate-tosevere vs. mild) was associated with unemployment (52.9% vs. 40.8%; p ¼ 0.0189), greater impairment in work productivity (36% vs. 21%; p ¼ 0.0003) and participation in daily activities (41% vs. 21%; p < 0.0001). This survey confirms that SLE and current treatment options substantially impair patients' health status and work productivity. Physician-and patientreported satisfaction with current treatment regimens, despite poorly controlled disease activity, indicate they are resigned to the limitations of available SLE treatment regimens. Lupus (2013) 22, 819-826.
Background Autoimmune and inflammatory diseases often affect women of reproductive age and can impact pregnancy outcomes. Two recent online surveys reported that female patients (pts) with systemic inflammatory diseases have important family planning and pregnancy (FPP) concerns and that cross-communication between healthcare specialties could be improved.1 The aim is to understand any differences in FPP issues across conditions. Objectives To compare FPP issues for female pts of child-bearing age in rheumatological vs gastrointestinal (GI) conditions. Methods Two online surveys were undertaken to identify FPP issues for both pts and physicians. The surveys were designed to gauge whether there is a gap in the communication by examining the frequency of dialogue on these topics between physicians and pts, alongside assessment of pt satisfaction regarding these discussions. Pt survey was targeted at premenopausal women and delivered in USA and Europe. The pt survey results were stratified by indication (Rheumatological [rheumatoid arthritis, systemic lupus, axial spondyloarthritis and psoriatic arthritis] vs GI [Crohn's disease and ulcerative colitis]). For the pt survey, differences between the rheumatological vs GI conditions were assessed using chi squared test for statistical significance. Rheumatologists were surveyed in Europe and the USA while gastroenterologists were surveyed in the USA. Results 697 rheumatological and 272 GI pts completed the survey; 55% and 54% respectively considered their condition a concern for family planning. 65% of rheumatological pts and 62% of GI pts reported their concerns relating to FPP are not adequately settled during their medical appointments (Table). Rheumatological and GI pts reported a lack of consistency in communication on FPP across healthcare professionals (Table). The results for these 2 questions were similar across specific rheumatological and GI indications (Table). There were no significant differences between rheumatological vs GI conditions for any of the pt responses tested (p>0.05). 251 rheumatologists and 100 gastroenterologists completed the physician survey. 49% to 65% of physicians spontaneously reported having discussed FPP with their female pts of child-bearing age across all indications surveyed. When prompted, 78% of rheumatologists and 73% of gastroenterologists reported specifically discussed conception/pregnancy with their female pts. Across specialties less than half of physicians who discussed FPP with their pts reported discussing FPP with their pt's treating GP (35% of rheumatologists [N=205]; 41% of gastroenterologists [N=79]) or gynaecologist (37% of rheumatologists [N=201]; 40% of gastroenterologists [N=78]). Conclusions Independent of their condition (whether rheumatological or GI) the majority of pts do not feel that their FPP questions are adequately addressed and have concerns about going on the FPP journey. This is not helped by the low interaction between their different caregivers. Furthermore, pts report that they rece...
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