'I'm hurting, I want to kill myself': Rheumatoid arthritis flare is more than a high joint count-an international patient perspective on flare where medical help is sought

摘要

Objective: People with RA have episodes of worsening disease activity (flares) that prompt them to seek clinical review or medication change. This study explored patients' perspectives of flare that prompts them to seek medication review. Methods: Fourteen focus groups across five countries comprised 67 RA patients. Transcripts were analysed by several researchers and a patient, using inductive thematic analysis. Results: Patients use flare for five different scenarios, including flare that prompts medical help-seeking, where six themes were identified. In 'Symptoms and early warnings', pain is intense (wanting to die), constant and persistent and considered a key feature. Systemic features predominate, including fatigue, feeling generally ill (flu-like), physical and cognitive shut-down and social withdrawal. Warning signs (prodrome) comprise fatigue and flu-like symptoms. 'Self-management of intensifying symptoms' includes pacing, heat/cold, rest and increasing medication, often without medical advice. Patients 'Define this as uncontrollable flare' when clusters of unprovoked, persistent symptoms halt their ability to run daily life, until prompted into 'Seeking help when symptoms can't be contained'. Underpinning themes are 'Individual context' (e.g. different symptom clusters) and 'Uncertainty' (e.g. when to seek help). Patients report that the current patient global visual analogue scale (VAS) does not capture flare. Conclusion: Patients use flare for multiple events and seek help for complex clusterings of intense, unprovoked symptoms that defy self-management, not necessarily captured in joint counts or global VAS. Flare terminology and definition have implications for clinical practice and trials, therefore further research should establish a professional/patient consensus.