EXPLORING THE PATIENT JOURNEY IN CHRONIC IDIOPATHIC/SPONTANEOUS URTICARIA: DISEASE MANAGEMENT

Abstract

Introduction The defining features of chronic idiopathic/spontaneous urticaria (CIU/CSU; spontaneous occurrence of wheals and/or angioedema) are challenging to manage and impact a patient's physical appearance, overall quality of life (QoL), and emotional wellbeing. The objective of this non-interventional qualitative study was to understand the patient's clinical journey and associated emotional burden from post-diagnosis through disease management. Methods Patients in U.S. with confirmed CIU/CSU, recruited (Jun–Aug 2017) with the assistance of advocacy/support groups, participated in semi-structured interviews focusing on: illness and treatment history; treatment perspectives; disease impact on personal/family life; and relationship with healthcare-providers (HCPs). Patients also documented disease impact in 3-day written/video diaries. HCPs were interviewed about their views on disease management and patient care. A thematic analysis of interview and diary data was performed. Results Twenty-five patients (76% female) aged 23–66 who had previously, or were currently, receiving treatment(s) for CIU/CSU, participated in the study. Following feelings of relief/confusion at diagnosis, a range of emotions were expressed during the disease management phase, including frustration with treatment cycling, depression, anxiety, and hope. Principal themes identified in the patient journey post-diagnosis included the concept of patients experiencing their ‘own personal hell’ (stress, hypervigilance, emotional upheaval, and flare-ups) and feeling ‘like an experiment’ (trial and error, seeking alternative treatments/specialists). Patient narratives are shown (Figure). Conclusions The narratives of patients post-diagnosis with CIU/CSU provide insight into the disease management phase of the patient journey. These findings highlight a number of unmet patient needs, including the need for improved patient care and management.