Takayasu's Arteritis from the patients' perspectives: Measuring the pulse to the patient-reported outcomes.

Abstract Background Patients with Takayasu’s Arteritis (TA) experience important changes in lifestyle, quality of life and functional status due to ischemic symptoms or treatment toxicity. Purpose To describe the clinical characteristics and the patient-reported outcomes (PROs), such as quality of life, disability, fatigue and perception/impact of the disease in Mexican patients with TA. Basic procedures Cross-sectional study including patients with established diagnosis of TA recruited at a tertiary care center. Demographics, comorbidities, clinical characteristics, laboratory, imaging and treatment were retrieved. Disease activity (ITAS 2010), damage (VDI), quality of life (SF-36), disability (HAQ-DI), fatigue (MFI-20), and patient’s disease perceptions were assessed. Main findings Fifteen women were included, with a median age of 41 years (IQR 30-45) and disease duration of 108 months (IQR 55-197). Median ITAS 2010 and VDI scores were 0 (IQR 0-2) and 3 points (IQR 2-6), respectively. Mean SF-36 score was 71.38 ± 13.39, with a mean physical and mental composite summaries of 66.52 ± 13.37 and 76.24 ± 14.89, respectively. HAQ-DI mean score was 0.48 ± 0.62, being grip the most affected domain. Among fatigue subscales, the higher scores were present in the physical fatigue (16.3 ± 5.8). Correlations between the HAQ-DI and the VDI score (r= 0.64, p=0.03); between the general fatigue score and disease duration (r= -0.71, p=0.01), and between the SF-36 total score and the HAQ-DI (r= -0.87, p=0.0004) were found. Conclusions It is important to identify disease specific outcomes of interest to the patients to develop tools that assess them with a holistic approach.