The burden of symptoms and the need to be listened to: what patients say
A survey reveals, amongst other things, a worrying gap of almost two years between the onset of the disease and its diagnosis, known as a diagnostic delay
As part of the international study Urticaria Voices, responses were collected from 64 patients with chronic spontaneous urticaria (CSU), to be published in 2025 in the Journal of Dermatological Treatment.
Chronic spontaneous urticaria is defined as a condition in which itchy wheals, angioedema or both recur for more than six weeks without an identifiable external trigger. Angioedema is a swelling that affects the deeper layers of the skin and may accompany the wheals or occur on its own. The term ‘spontaneous’ describes the absence of a defined external trigger, not the absence of biological mechanisms. Histamine plays a central role in the symptoms, but the condition involves more complex immunological processes: understanding these is essential for developing targeted treatments.
Patients completed an online questionnaire between February and September 2022. The average age was 42 years and around 70 per cent were women. At the time of the survey, an average of 9.6 years had elapsed since the onset of symptoms and 7.8 years since diagnosis. This discrepancy highlights a worrying gap of almost two years between the onset of the disease and its recognition, known as diagnostic delay.
Another worrying finding to emerge from the study concerns disease control. Almost 85 per cent of participants reported being unable to manage their condition. The impact on quality of life was also significant: the average negative impact was 6.3 on a scale of 1 to 10. The difficulties mainly concerned mental and emotional wellbeing, social life and intimate relationships. Twenty-eight per cent reported reduced self-confidence, 23 per cent irritability, 20 per cent a tendency towards depression and 19 per cent anxiety-related symptoms. Although these responses do not constitute psychiatric diagnoses, they clearly document the distress experienced by patients with CSU.
Consequently, when a doctor assesses the impact of urticaria, they should not limit themselves to examining the skin, but should also explore these personal, subjective aspects, such as the quality of sleep, the ability to work to one’s full potential, and the extent to which the symptoms affect one’s freedom to socialise with others.
