Background/Purpose: Glucocorticoids (GC) are widely used to treat inflammatory diseases, but are known to have many side effects. Patients’ perspectives of side effects are known to influence treatment decisions and adherence, yet few studies have investigated which side effects are important to patients. The aim of this study was to identify the side effects most important to GC users through a survey of a UK online health community (healthunlocked.com).

Methods: A short survey about GC use popped up when UK users viewed posts discussing steroids on healthunlocked.com. Responders were eligible if they were currently taking, or had taken GCs within the last month. Within the survey, responders had to score the importance of listed side effects from 1 to 10, with 10 being of high importance to them. The side effects shown in table 1 were listed alphabetically, with examples or descriptions as required. For each side effect, histograms were plotted, and the median rating and inter-quartile range (IQR) was determined. Side effects were ranked by median ranking (largest to smallest) and then IQR (smallest to largest) for those with the same median. The scores were categorised as low (scores 1-3), medium (scores 4-7) and high (scores 8-10) importance.

Results: There were 604 responders who completed the survey. The majority were over 50 years old (81%) and female (86%). Histograms of side effect scores showed a skew towards high importance for weight gain, a U-shaped distribution for CVD, diabetes, eye disease and infections, and a skew towards low importance for acne (Figure 1). When ranked the side effect of most importance to responders was weight gain (median score=9, IQR 6, 10) followed by insomnia and moon face with equal median score (8) and IQR (5, 10). Several side effects had the same median score of 8, but distribution across categories varied. Three clinically serious side effects: cardiovascular disease, diabetes and infection, were ranked of lower importance but had wide ranging scores (median score=8, IQR 1, 10). Acne was of least importance to responders (median score=1, IQR 1, 6) (Table 1).

Conclusion: The three most highly rated side effects were not clinically serious but remained important to patients, perhaps reflecting their impact on quality of life and their high prevalence. The importance of these less serious but potentially high impact side effects should be taken into consideration when discussing treatment options and planning future GC safety studies. Table 1: Median, inter-quartile range, rank and categories of side effect scores.

Figure 1:  Histograms of side effect ratings. 1=rating of lowest importance, 10=rating of highest importance.