A qualitative interview study exploring the lived experiences of adults, adolescents, and children with chronic inducible cold urticaria

Background Chronic inducible cold urticaria (ColdU) is characterized by itchy wheals (hives) with or without angioedema induced by cold exposure. It severely impacts patients’ health-related quality of life (HRQoL). Qualitative research describing the burden of ColdU from direct patients’ voice remains sparse. The study aims to explore the patients’ ColdU experience by identifying signs, symptoms, and associated impacts, and to develop the first conceptual model for ColdU from the patients’ perspective. Methodology One-to-one telephone concept elicitation (CE) interviews were conducted with patients with ColdU between 2022 and 2023. Participants were asked open-ended questions about their experience of the signs, symptoms and impacts and the most and least bothersome aspects of their disease. Results Eight adults and 5 adolescent participants interviewed reported 22 ColdU-related symptoms/signs and 32 impacts. Six children/caregiver dyads and 1 caregiver of a 2-year-old child with ColdU reported 17 ColdU-related symptoms/signs and 19 impacts. Patient experience of symptoms and impacts was similar across all age groups, with hives and itch reported most frequently as the most bothersome symptoms. Similarly, for impacts, all participants reported impairment in activities of daily living (e.g., not taking part in hobbies, wearing warm clothes). Two conceptual models of patients’ experience of ColdU (one for adult/adolescent patients and one for pediatric patients) were developed. Conclusions This study is the first to report the ColdU experiences directly from patients. It identifies hives and itch as being the core symptoms and describes the debilitating nature of ColdU and its substantial impact on the HRQoL of all age ranges.