SAT0631-HPR WHEN CAN I STOP MY STEROIDS? THE PATIENT PERSPECTIVE ON GLUCOCORTICOID USAGE IN ADULT INFLAMMATORY MYOPATHY

Abstract

Background:Glucocorticoids (GC) are long established as a first line treatment in patients with idiopathic inflammatory myopathy (IIM), in which high dose, long duration treatment is often required. GC usage is associated with a wide range of adverse effects (AEs). The patient perspective on the risks and benefits of GCs is not well studied and no prior studies assesses this issue in IIM patients (1).Objectives:To describe the perspective of IIM patients on GC treatment.Methods:We deployed an online survey distributed using the Myositis UK page on Healthunlocked.com, an online social network for health, with approximately 450 patients registered. Patients with diagnosed IIM were invited to take part on an anonymised basis. Respondents were asked to grade the severity on a Likert scale (1 to 5) of all AEs experienced in relation to GC. Additionally, respondents were asked to write about their concerns and to rate their overall experience with GC treatment.Results:In total, 122 completed surveys were received. Forty five percent (55/122) of respondents had dermatomyositis, 27% (33/122) polymyositis, 10% (12/122) anti-synthetase syndrome, 18% (22/122) other inflammatory myopathies. Seventy-nine percent (96/122) of respondents were female and the mean age overall was 50 years (SD [standard deviation] 14).The median reported current daily dose of prednisolone was 15 mg and median treatment duration was 5.3 years at the time of survey completion. Females were more likely to stay on GCs for longer than males (5.4vs4.7 years, p=0.046).Table 1.Mean severity and frequency for each adverse effect.All respondents(n=122)Male(n=26)Female(n=96)<60 years(n=89)≥60 years(n=33)Moon face3.3 (1.9)2 (2.1)*3.6 (1.7)*3.5 (1.8)2.7 (2)Weight gain3.4 (1.7)3.1 (1.6)3.4 (1.8)3.5 (1.7)3.1 (1.9)Acne1.1 (1.5)1 (1.5)1.2 (1.6)1.3 (1.6)0.7 (1.2)Hair loss2 (1.8)0.8 (1.4)*2.4 (1.8)*2.2 (1.8)**1.5 (1.9)**Facial hair2.1 (1.8)0.7 (1.3)*2.5 (1.8)*2.3 (1.8)1.7 (1.8)Thin skin2.2 (1.9)1.8 (2)2.3 (1.8)2.2 (1.9)2.3 (1.9)Bruising2.2 (1.7)2.1 (1.9)2.2 (1.7)2.2 (1.7)2 (1.9)Stretch marks1.3 (1.9)0.9 (1.5)1.4 (1.8)1.5 (1.9)**0.6 (1.2)**Nausea1.4 (1.7)1.6 (1.8)1.4 (1.6)1.5 (1.6)1.2 (1.7)Heartburn1.9 (1.8)1.8 (1.9)1.9 (1.8)2 (1.8)1.5 (1.8)Hunger2.8 (1.7)2.2 (1.9)*3 (1.6)*3 (1.6)2.4 (2)Mood swings2.7 (1.6)2.1 (1.8)2.7 (1.5)2.8 (1.6)2.6 (1.6)Sleep disturbances3.1 (1.5)2.9 (1.7)3.2 (1.4)3.2 (1.5)3 (1.5)Cataracts0.6 (1.3)1.1 (1.8)0.5 (1.1)0.5 (1.2)1 (1.6)Glaucoma0.4 (1.1)0.6 (1.5)0.3 (0.9)0.4 (1)0.4 (1)Hypertension1.6 (1.7)1.8 (1.7)1.5 (1.7)1.5 (1.7)1.8 (1.8)Diabetes0.8 (1.6)1 (1.6)0.8 (1.6)0.7 (1.5)1 (1.8)Water retention2.2 (1.7)1.7 (1.6)2.3 (1.8)2.3 (1.8)1.9 (1.6)Infections2.2 (1.7)2.2 (1.8)2.2 (1.7)2.2 (1.7)2.1 (1.7)Fractures0.5 (1.1)0.5 (1.2)0.5 (1.1)0.5 (1.6)0.5 (1.1)Mean severity on a Likert scale (0-5), mean (SD);*p<0.05, male vs female; **p<0.05, <60 years vs ≥60 years.Frequency (number of patients reporting adverse effect as present), heatmap:White (0-33%), light grey (33-66%), dark grey (66-100%).The mean number of reported AEs to GC treatment per patient was 12 (SD 5). Female respondents reported a greater number of AEs compared to males (12.6vs10.1, p=0.019). The three most commonly experienced AEs were: sleep disturbance (93%), mood swings (86%) and weight gain (86%). Only 54% of respondents agreed that the information given about the potential risks of GC treatment was adequate. Mean severity and frequency of AEs is represented in table 1.Conclusion:Adverse effects are common, and those rated more severe by patients were physical and behavioural (such as weight gain or sleep disturbance). Female patients reported more severe AEs compared to men.