Patient Experience in Systemic Lupus Erythematosus: Development of Novel Patient-Reported Symptom and Patient-Reported Impact Measures

February 2018 in “ Journal of Patient-Reported Outcomes ”

Susan D. Mathias, Pamela Berry, JE de Vries, Katie Pascoe, Hilary H. Colwell, David J. Chang, Anca Askanase

TLDR New tools were created to help lupus patients report their symptoms and impacts more accurately.

The study developed new patient-reported outcome (PRO) measures for systemic lupus erythematosus (SLE) to better capture patient experiences. It involved 42 patients in qualitative interviews to identify key symptoms and impacts, and 20 patients in cognitive interviews to refine the measures. The resulting tools, the SLE Symptom Severity Diary (SSD) and the SLE Impact Questionnaire (SIQ), were designed to be clear, comprehensive, and relevant, with short recall periods to accurately report symptom fluctuations. These tools aimed to improve the accuracy of patient-reported outcomes in clinical trials and practice, enhancing patient care and treatment evaluation.

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