Abstract Background People with axial spondyloarthritis (axSpA) frequently experience increases in symptoms (flares) related to pain, stiffness, and fatigue. Despite frequent use of the term ‘flare’ within axSpA, it is poorly defined and characterised. No widely accepted patient-reported outcome measure (PROM) exists which can identify axSpA flares or quantify their severity. However, the Evaluation of Ankylosing Spondylitis Quality of Life (EASiQoL) is a patient-derived axSpA-specific PROM, with strong evidence of its ability to assess quality-of-life, an aspect affected by changes in symptoms. Objective To establish the feasibility of identifying flares in people with axSpA through regular completion of an electronic (e) version of the EASiQoL. Methods Mixed-methods 12-month prospective cohort study. Up to 1000 people with axSpA from Rheumatology departments and all members of the National Axial Spondyloarthritis Society will be invited to complete a baseline questionnaire containing several ePROMs, including the EASiQoL, via a bespoke online study portal. Of the estimated 1280 responders, all will receive e-mail reminders to complete monthly questionnaires for the following 10 months, and a final 12-month follow-up questionnaire. Over the 12 months, a sub-sample of up to 40 participants, who report a flare during this period, will be invited to a qualitative interview. Their lived experience of ‘flare’, and how this was reflected in their EASiQoL scores, will be explored. Potential impact Collection of ePROM data sensitive to the presence of axSpA flares would provide readily accessible information to both patients and rheumatology teams to monitor disease course and develop more effective flare pathways in axSpA.
Prior et al. (Sat,) studied this question.
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