FP250
FACIT-FATIGUE SCORES IN ADULT PATIENTS AT ENROLLMENT INTO THE GLOBAL AHUS REGISTRY Free

INTRODUCTION AND AIMS: The scientific literature is limited in terms of defining fatigue levels observed in patients with atypical hemolytic uremic syndrome (aHUS). This analysis sought to evaluate fatigue in patients with aHUS at time of enrollment into the Global aHUS Registry.

METHODS: The observational, noninterventional, multicenter Global aHUS Registry (NCT01522183), initiated in April 2012, is designed to collect demographic characteristics, medical and disease history, and treatment and outcomes data for patients with aHUS. This was an analysis at time of Registry enrollment. Registry enrollment is not linked to any other clinical condition and is consequently a snapshot of characteristics of patients with aHUS in the Registry at a given time point. Fatigue was assessed using the Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue scale, in which higher scores indicate better quality of life. The analysis included all patients ≥18 years (y) of age with evaluable data regarding enrollment, date of birth, and FACIT-Fatigue score as of May 5, 2017. Patients were stratified into subgroups based on demographic characteristics, thrombotic microangiopathy (TMA) history, dialysis/transplant requirement, hospitalization, and use of eculizumab and plasma exchange/plasma infusion (PE/PI).

RESULTS: The Registry enrolled 1549 patients; 621 adult patients had evaluable data for FACIT-Fatigue and were included. Sixty-three percent (n=391) were female and the mean (standard deviation [SD]) age was 42.9 (16.6) y. Ongoing TMA was present in 295 patients (48%) and 159 (26%) were on dialysis at enrollment. Hospitalization within 6 months of enrollment occurred in 165 patients (27%). PE/PI was used in 154 patients (25%) within 6 months. Eculizumab treatment was ongoing in 51 patients (8%) and 241 (39%) had recent treatment. Mean (SD) FACIT-Fatigue score was 34.7 (12.4). Subgroups with the largest differences in mean score were patients on dialysis (25.8, acute; 35.9, none), with recent hospitalization (30.1, yes; 36.7, no), PE/PI use (31.1, yes; 35.8, no), and TMA signs/symptoms (32.5, ongoing; 38.1, resolved since >6 months).

CONCLUSIONS: These findings provide a clinical snapshot of patients with aHUS in a real-world setting. Dialysis requirement, recent hospitalization, use of PE/PI, and TMA status had the largest detrimental impact on FACIT-Fatigue scores in adult patients in the aHUS Registry. Future analyses will assess changes in FACIT-Fatigue scores over time with ongoing Registry follow-up.