Humanistic Burden of Refractory and Nonrefractory Chronic Idiopathic Urticaria: A Real-world Study in the United States

Abstract

PurposeChronic idiopathic urticaria (CIU) is a debilitating skin condition that can profoundly affect patients’ quality of life. This study explored the impact of refractory and nonrefractory CIU on patients in the real-world setting in the United States. MethodsData were collected from the Adelphi Real World 2015 Urticaria Disease-Specific Programme. Physicians completed patient record forms (PRFs) for 4 consecutive patients consulting with nonrefractory CIU and 6 patients with refractory CIU. The PRF included information on patient characteristics, medication, and disease severity; physicians were asked about the impact of CIU on patients, and to rate their satisfaction with patients’ treatment (scale, 1–7 [1 = extremely dissatisfied and 7 = extremely satisfied]). The same patients were asked to complete a patient self-completion form (PSC). This included questions regarding how CIU affected their everyday life and their satisfaction with and understanding of their condition and medications. The PSC included a number of patient-reported outcomes measures: the Dermatology Life Quality Index (scored from 0 to 30, with higher scores indicating greater impact), the Work Productivity and Activity Impairment (4 scores calculated [absenteeism, presenteeism, work productivity loss, and activity impairment], each scored from 0% to 100% after transformation, with higher scores indicating greater impairment), and the Jenkins Sleep Scale (assessed over 30 days; scored from 0 to 20, with higher scores indicating greater sleep disturbance). Completion of the PSC was voluntary. FindingsSeventeen physicians completed a total of 184 PRFs (108 for patients with refractory CIU; 76 for those with nonrefractory CIU); 140 of these 184 patients completed a PSC form (93 with refractory CIU; 47 with nonrefractory CIU). Overall, 26% of the entire population (30% of patients with refractory CIU and 17% with nonrefractory CIU) reported that skin symptoms had a great effect on their lives (Dermatology Life Quality Index score ≥11). Sleep problems were common: mean Jenkins Sleep Scale scores were 7.8 overall (8.1 for patients with refractory CIU and 7.2 for those with nonrefractory CIU). Overall work impairment was 19% in the overall population, with similar values in refractory and nonrefractory patients (18% and 20%, respectively). Physician satisfaction with disease control was not high, with physicians reporting a mean score of 4.8 on a 7-point scale. Twenty-one percent of patients were extremely dissatisfied, very dissatisfied, or dissatisfied with their treatment, and 52% believed better control could be achieved. ImplicationsThe humanistic burden of CIU is high. There is clearly a need for better management of CIU to improve outcomes for patients.