Abstract
Introduction Chronic idiopathic/spontaneous urticaria (CIU/CSU) is characterized by the spontaneous appearance of wheals and/or angioedema, and affects physical appearance and quality of life (QoL). The objective of this non-interventional qualitative study was to understand patient perspectives and key stages of the journey from symptom onset through diagnosis. Methods Patients in U.S. with confirmed CIU/CSU, recruited (Jun–Aug 2017) with assistance from advocacy/support groups, participated in semi-structured interviews focusing on: illness and treatment history; disease impact on personal/family life; relationship with healthcare-providers. Patients also documented disease impact in 3-day written/video diaries. 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. Key stages identified in the patient journey following symptom onset were: Crisis (associated with feelings of torment, disorientation, shock); Searching for Answers (puzzlement, frustration, anxiety); Diagnosis (relief, satisfaction, fear, isolation). Predominant themes emerging from patient responses included the concept of living with their ‘skinemy’ (feeling their body had turned against them, loss of normalcy/identity, unpredictability); questioning ‘what the heck is going on?’ (unrelenting symptoms, self-medication attempts, work absenteeism); and relief/confusion at diagnosis (distress, relief, questioning of idiopathy, variability in available support and time to diagnosis). Patient narratives are shown (Figure). Conclusions Patient narratives provide insight into the impact of CIU/CSU on QoL and the emotional burden of living with CIU/CSU. These findings highlight the need for additional support services to improve patient care at symptom onset and through diagnosis.
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