Patient-Reported Outcomes Highlight Impacts of Chronic Inducible Cold Urticaria

New research is helping shed light on the ways chronic inducible cold urticaria (ColdU) can affect the daily lives of children, adolescents, and adults. The research is based on interviews with more than 2 dozen patients and caregivers and was published in the Journal of Patient-Reported Outcomes.¹

ColdU is a rare form of chronic inducible urticaria in which patients experience the rapid onset of pruritic wheals and/or angioedema upon exposure to cold stimuli. The reaction can be sparked by anything from cold weather to cold showers or even cold food and beverages, explained corresponding author Ashna Alladin, PhD, of the health care consultancy and research firm IQVIA Patient Centered Solutions, and colleagues. Symptoms appear quickly and can recur over a period of several weeks, they added.²

Aside from the direct effect of the itching and painful sensations, patients also tend to adopt strategies to avoid cold exposure. Those strategies themselves can also negatively impact patients’ quality of life, Alladin and colleagues noted.

ColdU is estimated to impact approximately 1 in every 2000 people globally.³ It predominantly affects young adults. The authors said there is limited data on childhood ColdU, though they said the available research suggests its symptoms and prevalence in children are similar to those in adults.

Yet, while the condition’s prevalence and symptoms have been well-studied, Alladin and colleagues said there is relatively little research related to the ways ColdU impacts patients’ daily lives. The investigators decided to conduct one-on-one telephone interviews with patients and caregivers to better understand the real-world impact of ColdU. Participants were asked to answer a series of open-ended questions related to their experiences of ColdU. Respondents included 8 adults, 5 adolescents, 6 child/caregiver dyads, and 1 caregiver of a 2-year-old child.

Alladin and colleagues found that the symptoms and impacts were similar across age groups. Hives and itch were commonly cited as the “most bothersome” aspect of the disease.

“Most patients described their hives as itchy,” the investigators said. “They also reported swelling occurring concurrently with hives and, in some cases, could affect entire body parts, such as hands and fingers.” Most of the participants also said they experience burning and swelling sensations, and most said their skin feels warm or hot to the touch.

Patients said they could alleviate the pain by distancing themselves from the stimuli. It often went away within minutes, though some participants said it could take up to 90 minutes for the reaction to go away.

Adult and adolescent patients said there were significant impacts to their daily lives, including impacts to their hobbies and clothing choices. Participants also said the condition led to emotional impacts, as they had to limit or alter their participation in athletics or social activities.

One participant said they would wear “ski pants” when it was cold outside, even as their peers would be wearing jeans. In the child/caregiver dyads, some children complained that their parents made them wear extra layers of clothes to go out in the cold.

Alladin and colleagues said they believe their study is the first study to report on the experiences of signs, symptoms, and impacts of ColdU in adults, adolescents, and children.

“This study significantly contributes valuable and novel perspectives, enhancing our understanding of the signs, symptoms, and day-to-day impacts of ColdU on patients across different age groups,” the investigators wrote.

However, the authors also noted that recruitment challenges made it impossible to include perspectives from a diverse range of patients. Still, they said their findings provide a “strong foundation” for future work to address the challenges patients with ColdU experience on a daily basis.

References

1. Alladin A, Guillemin I, Chuang CC, et al. A qualitative interview study exploring the lived experiences of adults, adolescents, and children with chronic inducible cold urticaria. J Patient Rep Outcomes. Published online December 6, 2025. doi:10.1186/s41687-025-00970-6

2. Magerl M, Altrichter S, Borzova E, et al. The definition, diagnostic testing, and management of chronic inducible urticarias—The EAACI/GA(2)LEN/EDF/UNEV consensus recommendations 2016 update and revision. Allergy. 2016;71(6):780-802. doi:10.1111/all.12884

3. Maltseva NP, Riabova KA, Zhernov YV. Cold and cholinergic urticaria: predictors of anaphylaxis and therapeutic approaches—what we know and what we do not know? Immuno. 2024;5(4):44. doi:10.3390/immuno5040044