Exploring the real-world profile of refractory and non-refractory chronic idiopathic urticaria in the USA: clinical burden and healthcare resource use

<b>Introduction:</b> Chronic idiopathic/spontaneous urticaria (CIU/CSU) is a debilitating skin condition that is burdensome for patients and healthcare providers. We aimed to describe clinical characteristics, consultation patterns and healthcare resource utilization in real-world US patients with refractory and non-refractory CIU/CSU. <b>Methods:</b> Data was collected from the Adelphi Real World 2015 Urticaria Disease Specific Programme. Physicians completed patient record forms (PRFs) for the next four patients consulting with non-refractory CIU/CSU and the next six with refractory CIU/CSU; patients were considered refractory if symptomatic and on treatment step ≥2. The same patients were asked to complete patient self-completion (PSC) forms describing how CIU/CSU affected them. <b>Results:</b> Seventeen physicians (15 allergists; 2 dermatologists) completed 184 PRFs (108 refractory CIU/CSU; 76 non-refractory CIU/CSU); 140 patients completed PSC forms (93 refractory CIU/CSU; 47 non-refractory CIU/CSU). Mean time from first consultation to diagnosis was 13.5 (SD 28.3) weeks; mean time from diagnosis to first treatment was 16.0 (SD 37.9) weeks. Patients with refractory CIU/CSU were more likely to initially consult primary care physicians than those with non-refractory CIU/CSU (51% and 28%, respectively). The most common symptoms were itching, sleep problems and anxiety/distress, affecting 75%, 23% and 18%, respectively. Patient-perceived disease severity was greater than physician-perceived severity (refractory CIU/CSU kappa 0.1512; non-refractory CIU/CSU 0.1590). <b>Conclusions:</b> Patients with CIU/CSU in this real-world study – particularly those with refractory CIU/CSU – were slow to receive specialist care and had substantial symptom burdens; patient–physician perception of disease severity was discordant. Earlier diagnosis of CIU/CSU may lead to timely use of CIU/CSU therapies.