Rheumatology advances in practice · 2025
Identifying axial spondyloarthritis flares using the Evaluation of Ankylosing Spondylitis Quality of Life (EASiQoL) patient-reported outcome measure via an online portal: the FASTER study protocol.
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Prior James A, Parsons Helen, Haywood Kirstie L, Scott Ian C, Grange Jake, Williams Alison, Packham Jon
Аннотация
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 that 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: This study will look at the feasibility of identifying flares in people with axSpA through regular completion of an electronic (e) version of the EASiQoL.
METHODS: We will conduct a 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 subsample 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 should provide readily accessible information to both patients and rheumatology teams to monitor disease course and develop more effective flare pathways in axSpA.
OBJECTIVE: This study will look at the feasibility of identifying flares in people with axSpA through regular completion of an electronic (e) version of the EASiQoL.
METHODS: We will conduct a 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 subsample 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 should provide readily accessible information to both patients and rheumatology teams to monitor disease course and develop more effective flare pathways in axSpA.