Glucocorticoids (GCs) are widely used in the rheumatic diseases, including rheumatoid arthritis, vasculitis, lupus, and giant cell arteritis.
They are an effective therapy which can be life-saving but have significant adverse effects. We are developing a patient reported outcome measure (PROM), or standardised questionnaire, to measure the impact of glucocorticoid use on patients’ symptoms and health-related quality of life. This will be used in clinical care to target treatment or clinical trials of steroid-sparing agents.
Qualitative patient interviews were conducted in Australia (n=10), United Kingdom (n=35)
and USA (n=10) by experienced qualitative researchers. Patients with a range of demographics, rheumatic diseases and levels of GC exposure across three continents were recruited in Adelaide for the Australian interviews. Following transcription of these interviews in Australia, these were collated with the interview transcripts of those from UK and USA.
Thematic analysis of these interview as well as data from previous interviews undertaken as part of the Glucocorticoid Impact Working Group of OMERACT (Outcome Measures in Rheumatology) were used to draft the first iteration of the GC-PROM. This work has been supported by the OMERACT GC Working Group which has involved a patient research partner.
We held a virtual international workshop in October 2020 which endorsed the core domain set for measuring of outcomes in GC which has recently been published (reference below).
We are currently undertaking cognitive interviews of the draft of the GC-PROM which will determine patient acceptability and understanding.
There have been some delays to the project mainly due to the COVID-19 pandemic in UK and USA.
We are now seeking funding for a larger validation study.
We sincerely thank Australian Rheumatology Association for the funding; and Arthritis Australia for support, which has allowed the research to be carried forward. We would also like to thank the participants of our study who gave their time for our research.