Background:Fatigue is among the top complaints of patients with systemic lupus erythematosus (SLE), but only in part associated with SLE disease activity. Physical activity can help to reduce fatigue and should therefore be recommended to SLE patients. Vice versa, fatigue may arguably lead to reduced physical activity.Objectives:To investigate the extent of physical activity and the perception of fatigue and sleep quality in patients with SLE.Methods:Starting in February 2019, SLE patients were invited to participate in a cross-sectional survey study of fatigue and physical exercise during their routine outpatient clinic visits. Participants filled out a ten-page paper questionnaire focused on physical activity. To evaluate fatigue, we primarily used a 10 cm visual analogue scale (0-100 mm, with 100 meaning most fatigued), but also the FACIT fatigue score (range 0-52). Sleep quality was estimated using grades from 1 (excellent) to 6 (extremely poor).Results:93 SLE patients took part in the study. All patients fulfilled the European League Against Rheumatism/ American College of Rheumatology (EULAR/ACR) 2019 classification criteria for SLE. 91% of the patients were female. Their mean (SD) age was 45.5 (14.3) years and their mean disease duration 12.1 (9.4) years. The mean BMI was 25.2 (5.6). Of all patients, 7.5% had a diagnosis of (secondary) fibromyalgia. The mean fatigue VAS was 32 (27) mm and the mean FACIT fatigue score 35.7 (10.3). As expected, fatigue by VAS and FACIT was correlated (Spearman r=-0.61, p<0.0001). The mean SLEDAI was 1 (1) with a range of 0 to 6. Median glucocorticoid doses were 2 mg prednisolone equivalent, with a range from 0 to 10 mg.Out of 66 patients in payed jobs, 64 (97%) reported details on their working space. One person (2%) worked in a predominanty standing position, 37 (58%) worked in essentially sedentary jobs and 26 (40%) were in positions where they were mildly physically active in part. The mean fatigue VAS was 31 (24) mm for patients with partly active jobs and 27 (30) mm for those in sedentary jobs. Sleep was graded 2.9 (0.9) by those with active and 3.1 (1.3) by those with sedentary jobs.Half of the patients (51%) reported more than one physical recreational activity. 44 (47%) were walking and for five persons (5%) this was the only form of activity. Cycling was reported by 19 patients (20%), 18 of whom also practiced other activities. For transport, 52 (56%) in part chose active modes, such as walking and cycling. Patients who reported any of the above activities showed a mean fatigue VAS of 28 (25) mm, compared to 36 (28) mm in the patient group without a reported activity. Sleep quality was very similar: 3.1 (1.2) and 3.2 (1.1) for more active and more passive patients, respectively.65 (70%) patients regularly practiced sports. Of these, 39 (60%) practiced one kind of sport, 15 (23%) two, 7 (11%) three, and 2 (3%) each four and five kinds of sports. Fatigue VAS of patients practicing sports was 27 (25) mm versus 43 (28) in those who did not (p=0.0075). Sleep quality was 2.9 (1.1) in the sports cohort and 3.5 (1.1) in the no-sports cohort (p=0.0244).Conclusion:A majority of SLE patients in remission or low to moderate disease activity regularly practiced sports, and those doing so reported lesser fatigue and better sleep quality. The absolute values on the fatigue VAS were in a moderate range that made fatigue as the main cause of not performing sports rather unlikely for most patients.Disclosure of Interests:Helena Wohland: None declared, Nicolai Leuchten Speakers bureau: AbbVie, Janssen, Novartis, Roche, UCB, Consultant of: AbbVie, Janssen, Novartis, Roche, Martin Aringer Speakers bureau: AbbVie, Astra Zeneca, BMS, Boehringer Ingelheim, Chugai, Gilead, GSK, HEXAL, Lilly, MSD, Novartis, Pfizer, Roche, Sanofi, UCB, Consultant of: AbbVie, Astra Zeneca, BMS, Boehringer Ingelheim, GSK, Lilly, MSD, Roche, Sanofi, UCB
Patient experience of different regional models of urgent and emergency care: a cross-sectional survey study