To understand the effects of glucocorticoids (GC), which are of importance to patients.
The results of 2 literature reviews, a patient survey, and a qualitative study were presented.
No validated instrument exists to evaluate GC effect on patients. Survey data revealed skin thinning/bruising, sleep disturbance, and weight gain as the most frequent adverse effects. The qualitative research yielded rich data covering rapid benefits and physical and emotional consequences of GC.
It was agreed that a patient-reported outcome to measure GC effect was required and a research agenda was developed for this goal.