s257was observed as to what 'disease activity' conceptualized on the PGA-DA; patients better understood the PGI-S. Some patients experienced joint stiffness throughout the day and not only in the morning. Recall preference was split amongst the sample; however, some patients were unable to accurately recall their symptoms over 7 days, while all patients could recall over 24 hours. ConClusions: All the PRO measures are suitable for SLE patients to self-report symptom severity except the PGA-DA; the PGI-S is a preferable global assessment. A 24-hour recall period would provide a more accurate representation of symptom experience than a 7-day recall period. Patients highlighted a need for new SLE therapies.

using the survey results and findings from the literature: cost of travel to receive healthcare (£780), household expenses (£136), cost of moving home (£65) and lost accommodation costs (£214). ConClusions: Patient survey results showed that aHUS has a substantial economic burden to patients, their carers and society. The total economic burden from lost productivity of patients, carers and out-of-pocket expenses was estimated to be £9,243 per aHUS patient per year.