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Patient perceptions of glucocorticoid side effects: a cross-sectional survey of users in an online health community

Abstract

Objectives To identify the side effects most important to glucocorticoid (GC) users through a survey of a UK online health community (Healthunlocked.com).

Design Online cross-sectional survey.

Setting Participants were recruited through Healthunlocked.com, an online social network for health.

Participants Adults who were currently taking GCs, or had taken GCs in the past month.

Method Responders scored the importance of listed side effects from 1 to 10, with 10 being of high importance to them. For each side effect, histograms were plotted, and the median rating and IQR were determined. Side effects were ranked by median ranking (largest to smallest) and then IQR (smallest to largest). The scores were categorised as low (scores 1–3), medium (scores 4–7) and high (scores 8–10) importance.

Results 604 responders completed the survey. Histograms of side effect scores showed a skew towards high importance for weight gain, a U-shaped distribution for cardiovascular disease (CVD), diabetes, eye disease and infections, and a skew towards low importance for acne. 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). Three serious side effects, CVD, diabetes and infections, were ranked of lower importance overall but had wide ranging scores (median score=8, IQR 1–10).

Conclusions 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 high prevalence. This should be taken into consideration when discussing treatment options and planning future GC safety studies.

  • Steroids
  • Side effects
  • Patient beliefs

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Contributors WGD conceived the idea. WGD, JMcB, JH and RC were responsible for the design of the study. RC conducted the analysis and drafted the manuscript. All authors interpreted the results, critically revised the manuscript for important intellectual content and approved the final manuscript.

  • Funding This work was supported by the Arthritis Research UK Centre for Epidemiology (20380). WGD was supported by an MRC clinician scientist fellowship (G0902272).

  • Competing interests None declared.

  • Ethics approval The study received ethics approval from the University of Manchester Research Ethics Committee (Ref: 15496).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Data are available and can be accessed by contacting Professor William Dixon (will.dixon@manchester.ac.uk).

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