The Spectrum of Health Domains Important to Lupus Patients: Early Development of a Disease Activity Patient Reported Outcome

    March 2019 in “ PubMed ”
    Anca Askanase, Samantha Nguyen, Kayla Neville, George Danias, Leslie Hanrahan, Joan T. Merrill
    TLDR A new tool helps lupus patients and doctors better track symptoms and quality of life.
    The study focused on developing a patient-reported outcome (PRO) measure for systemic lupus erythematosus (SLE) called the Lupus Foundation of America-Rapid Evaluation of Activity in Lupus (LFA-REAL™). An initial focus group of 10 female SLE patients identified key health domains, which were then ranked by 100 SLE patients. The top domains included joint and muscle pain, fatigue, and quality of life. The resulting PRO, combined with clinician-reported outcomes (ClinROs), aimed to provide a comprehensive assessment of lupus disease activity, incorporating both patient experiences and clinical evaluations. This dual approach was intended to enhance routine clinical care and research by capturing the full spectrum of lupus disease activity.
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