The issue of GPs and the ‘Ulysses syndrome’ affecting patients

Chronic spontaneous urticaria (CSU) is a fairly common autoimmune condition which is estimated to affect at least 1 per cent of the general population. It is characterised by the appearance of fleeting and extremely itchy skin lesions known as wheals, which closely resemble mosquito or nettle stings, ranging in size from a few millimetres to tens of centimetres, which in 50% of cases are associated with episodes of swelling that may affect various parts of the body (lips, eyelids, hands, feet, etc.) and resolve more slowly, known as angioedema. The condition is defined as chronic when, either continuously or intermittently, it lasts for more than 6 weeks. In most cases, the condition responds to standard treatments such as antihistamines, but in a proportion of patients it is severe enough to require the use of biologics or immunosuppressants.

The diagnosis, assessment of severity and treatment levels for chronic spontaneous urticaria are clearly defined by international guidelines, which are updated every three years by a panel comprising the world’s leading experts in this condition.

Whilst the guidelines are widely accepted and regularly used by specialists in the field (primarily allergists/immunologists and dermatologists), their application by general practitioners – who, in most cases, are the first point of contact for patients – is highly questionable. This often results in inadequate treatment, inappropriate assessments of the severity of symptoms, diagnostic delays, and the so-called ‘Ulysses syndrome’, in which the patient wanders for months from one specialist to another (often with little expertise in the field) without finding a solution. Needless to say, delays in diagnosis and in starting appropriate treatment have a very negative impact on the quality of life of patients with chronic spontaneous urticaria, particularly those with the most severe forms that are resistant to standard treatments.

The BRIDGE study, launched two years ago by Novartis in collaboration with Thermo Fisher and with the support of specialists in chronic spontaneous urticaria practising in Lombardy, aimed to provide a snapshot of theshortcomings in the diagnosis and treatment of this condition by general practitioners in Lombardy, and to assess the feasibility and effectiveness of implementing a specific information and training package (known as the “Urticaria Care Package”, UCP) on the quality of primary care. The first part of the study, recently published in “The Journal of Allergy and Clinical Immunology: Global”, assessed the situation prior to the delivery of the information package to over 90 general practitioners, highlighting significant shortcomings regarding knowledge of the condition and clinical guidelines, its optimal treatment and the use of so-called PROs (patient-reported outcomes), which are both objective and subjective measures of severity and impact on quality of life based on patients’ own reports. Issues also emerged regarding collaboration and effective communication between GPs and specialists in chronic spontaneous urticaria. It was concluded that Italian GPs require additional, specific training aimed at improving their skills in treating this condition.

The UCP was developed and subsequently presented to general practitioners who had taken part in the first phase of the study, with the aim of significantly improving clinical decision-making in primary care through the use of patient-reported outcomes (PROs) and adherence to guidelines. Almost all the doctors who took part in the first phase agreed to participate in the second phase of the study as well. The effectiveness of the implementation was subsequently assessed using a specific questionnaire. This second phase of the study, which is currently being finalised and will soon be published to make it available to the scientific community, has demonstrated that the delivery of the educational/information package led to a significant improvement in GPs’ specific skills, with a marked reduction in the number of diagnostic uncertainties and a significant increase in the proportion of GPs aware of the condition and the relevant guidelines, alongside greater use of PROs. The use of the UCP has therefore proved to be an effective means of improving the management of chronic spontaneous urticaria in general practice, to be implemented on a wider scale both in Italia and in other countries.