232VP Patient knowledge of the risks of glucocorticoid management in a specialist adult muscle clinic

Abstract

The prescribing of long-term glucocorticoids has recently been highlighted as a safety concern within the NHS due to the risk of adrenal suppression and subsequent adrenal crisis during intercurrent illness. In a recent four-year period, the National Reporting and Learning System (NRLS) identified 2 deaths, 6 incidents of severe harm, and 70 other incidents of harm related to this medication. We conducted this study to ascertain the level of risk in our clinic and implement strategies to improve patient safety. To evaluate and improve glucocorticoid management in patients under the Adult Oxford Muscle Service, we conducted structured telephone interviews with patients on this treatment [Duchenne muscular dystrophy (DMD) and idiopathic inflammatory myopathy (IIM)] and their families. Twenty patients were included, 11 with a diagnosis of DMD (all male) and 9 with a diagnosis of IIM (5 male). The age range was 18 - 81 years and current glucocorticoid dose was 7 - 50 mg prednisolone daily. Our results revealed that patients frequently were not confident about what to do if they were unwell or missed a dose of glucocorticoid. The proportion that did not know what to do when unwell was 70%, when vomiting was 60%, and with symptomatic SARS-CoV-2 (Covid-19) infection was 75%. Ten patients (50%) did not carry a steroid card. Knowledge across this group varied considerably. Our study highlighted the fact that this cohort of patients (and their families) are often unaware how to manage their medication safely, putting them at risk of complications of adrenal suppression. These findings helped us to implement strategies to reduce this risk including frequently reiterated written and oral guidance on glucocorticoid therapy and its potential complications. We anticipate that this significantly reduces the risk of patient harm. Given the almost ubiquitous use of glucocorticoids in many areas of medicine, we feel it is useful for others to consider similar studies in their practice.