PARE0020 EXERCISE FOR LUPUS PATIENTS

Background Up to 80% of all Lupus patients experience fatigue and most of them report this as the most severe symptom. One of the major causes of morbidity in SLE patients is chronic, debilitating fatigue, decreasing quality of life, increasing risk of work disability with associated cumbersome healthcare costs. Several research papers show that the only thing clinically proven to have an effect on Lupus fatigue is moderate exercise. If you tell this to a Lupus patient experiencing fatigue, however, you will find it very difficult to motivate them to exercise. The challenge is to make them realise that exercise does not necessarily mean running a marathon or going to the gym – a little movement goes a long way. Objectives To get lupus patients to exercise and thereby experience less fatigue/better manage their disease. Methods Develop an exercise program, that is approved by physiotherapists and leading lupologists, easy to do and inspires Lupus patients to keep active even when they feel exhausted. Results In collaboration with physical therapists Lupus Europe has developed an exercise program from our own experiences and had it approved by leading European lupologists. The program has five levels; from lying in bed up until being able to run and jump. All exercises can be done at home without training tools. In order to make it accessible we have planned to make five videos (with Lupus patients), shoving how to do each exercise and five connected pamphlets. We have already recorded the first three levels and are planning to finish the entire “package” in 2019. The materials will be made available to all Lupus patients on the Lupus Europe web site and YouTube channel free of charge. Conclusion We have already seen good results within the Lupus community, where people are finding the program easy to use and a help to keeping them active. Our hope is, that researchers will use our program to investigate its effectiveness on Lupus fatigue. References [1] Piper BF. Pathophysiological Phenomena in Nursing: Human Responses to Illness. PA, USA: WB Saunders; 1993. pp. 279–302. [2] Ramsey-Goldman R, Rothrock N. Fatigue in systemic lupus erythematosus and rheumatoid arthritis. PM R. 2010 May; 2(5):384–92. [3] Da Costa D, Dritsa M, Bernatsky S, Pineau C, Menard HA, Dasgupta K, Keschani A, Rippen N, Clarke AE. Dimensions of fatigue in systemic lupus erythematosus: relationship to disease status and behavioral and psychosocial factors. J Rheumatol. 2006 Jul; 33(7):1282-8. [4] Wang C, Mayo NE, Fortin PR. The relationship between health related quality of life and disease activity and damage in systemic lupus erythematosus. J Rheumatol. 2001 Mar; 28(3):525-32. [5] Al Dhanhani AM, Gignac MA, Su J, Fortin PR. Work disability in systemic lupus erythematosus. Arthritis Rheum. 2009 Mar 15; 61(3):378-85. [6] Panopalis P, Yazdany J, Gillis JZ, Julian L, Trupin L, Hersh AO, Criswell LA, Katz P, Yelin E. Health care costs and costs associated with changes in work productivity among persons with systemic lupus erythematosus. Arthritis Rheum. 2008 Dec 15; 59(12):1788-95. [7] Ramsey-Goldman R, Schilling EM, Dunlop D, Langman C, Greenland P, Thomas RJ, Chang RW. A pilot study on the effects of exercise in patients with systemic lupus erythematosus. Arthritis Care Res. 2000 Oct; 13(5):262-9. Acknowledgement Mols Fysioterapi Disclosure of Interests None declared