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

Abstract

Introduction: 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.

Methods: 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.

Results: 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).

Conclusions: 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.

Keywords:

• Chronic idiopathic urticaria
• chronic spontaneous urticaria
• real-world
• refractory
• management

Transparency

Declaration of funding

Sponsorship for the study and editorial assistance were funded by Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA.

Author contributions

All named authors meet the International Committee of Medical Journal Editors (ICMJE) criteria for authorship for this article, had full access to the data in this study, take responsibility for the integrity of the data and accuracy of the data analysis, and have given their approval for this version to be published.

Declaration of financial/other relationships

B.H. has disclosed that he is employed by Adelphi Real World. B.O., B.P. and A.K. have disclosed that they are employees of Novartis Pharmaceuticals Corporation and own stock or stock options. The authors have indicated that they have no other conflicts of interest regarding the content of this article. CMRO peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Acknowledgements

The authors thank David Bell and Stuart Blackburn of Adelphi Real World for their contribution to the data acquisition and analysis. Editorial assistance in the preparation of this article was provided by Deirdre Carman, and was funded by Novartis Pharmaceuticals Corporation.

Data availability

The datasets generated and/or analyzed during the current study are not publicly available as these are proprietary data. All of the conclusions drawn in the manuscript are based on data included in the publication and supporting literature has been provided.