Background Dysphagia represents a frequent and disabling symptom in patients with idiopathic inflammatory myopathies (IIM). Despite this, there are not widely accepted diagnostic and therapeutic guidelines for dysphagia in IIM.

Objectives This study is aimed at surveying the approach to dysphagia in IIM patients in European and worldwide referral centres.

Methods An anonym on-line survey was designed and clinicians from European Union (EU) countries, and countries from North and Central America and South Korea were invited via email to participate. The questionnaire included 11 items about the characteristics of the hospital of the responder, the evaluation of the impact of dysphagia on disease severity assessed on a visual analogue scale (10 VAS), the techniques used for the assessment of dysphagia, the use of validated patients reported outcome (PRO) and the therapeutic approach of dysphagia.

Results Between December 2017 and January 2018, 52 clinicians from different centres working in 21 different countries (18 EU countries, 3 non-EU countries) completed the survey. The total numbers of patients followed in the participating centres were 3817 with an average number of patients followed in each centre of 75 (±83). The majority of centres followed only adult patients,⁴⁵ 2 only paediatric patients (<18 years) and 5 both. The impact of dysphagia on disease severity was considered severe by all the participants with a mean VAS score of 7.3. All but one centre routinely ask the patients for the presence of dysphagia during the clinical examination. The assessment of dysphagia is performed using validated PRO questionnaires in only 7 centres (SWAL-QOL 2 centres, EAT-10 2 centres, MDADI 2 centres, UCLA-GIT 1 centre); 2 centres evaluate dysphagia using a graduate dysphagia scale by means a 10 cm VAS, and 2 routinely screen patients by a functional test (time necessary to drink a glass of water).

In all the centres an instrumental evaluation of esophageal motility is performed: esophageal manometry in 24 centres, videofluoroscopic swallowing exam in 17, esophageal barium x-rays in 16, and pHmetry and functional endoscopy in 14 each. Esophageal scintigraphy and esophagogastroscopy were respectively performed in 5 and 3 centres. The presence of dysphagia greatly influences the therapeutic approach to IIM in 49 centres leading to an increase of the corticosteroids dosage (11 centres), a change of the immunosuppressive treatment¹² or the initiation of intravenous immunoglobulins (IvIg).²⁶

Conclusions This study suggests that the approach to dysphagia is variable, but dysphagia has an impact on IIM patients and influences the therapeutic decisions of the treating physician. Different therapeutic strategies are adopted regarding the treatment, and in many cases highly expensive drugs as IvIg are prescribed. Further studies and recommendations are certainly needed for homogenising the patient management for this severe aspect of the disease.

Disclosure of Interest None declared