To understand patient perspectives about adverse effects of glucocorticoids and use this data to inform the creation of an educational video for treatment counselling.

Glucocorticoids are often first-line therapy for many neuromuscular disorders. While clinicians counsel patients about potential glucocorticoid complications, research has demonstrated that there are discrepancies in the information retained by patients and discussions may not address side effects that patients prioritize most.  

Qualitative surveys (n=21) were distributed to patients taking glucocorticoids at the St. Michael’s Hospital Neuromuscular Clinic. Descriptive and statistical analysis was performed to assess patient recollection of their counselling experience. These results informed the development of an educational video and subsequently, additional qualitative surveys are currently being distributed to evaluate its effectiveness.

The most important side effects patients reported included the following: weight gain, infection risk, osteoporosis, and diabetes. Side effects considered important to patients were generally concordant with the ones they recalled being counselled on without a significant difference (p = 0.42). However, 61% of patients reported being counselled on less than half of the listed adverse effects of glucocorticoids with 25% of patients reporting being counselled on 0-1 side effects. The results of this survey guided the development of an educational video and additional results of the effectiveness of the video as a tool will be presented at the conference.

We report on the glucocorticoid side effects most important to patients, and note that patient recollection of counseling is not always concordant with the discussion recorded by the physician. The survey results identified the most important side effects experienced by patients and this informed the creation of an educational video to compliment counselling. Moving forward, additional surveys will be used to evaluate the effectiveness of the video as a resource to improve patient awareness of side effects.