AB0674 Providing patients with systemic sclerosis by medical care in Russia: the first data from Moscow Register of Systemic Sclerosis

Abstract

BackgroundSystemic sclerosis (SSc) is a multisystem, connective tissue disease characterized by fibrosis of the skin and internal organ involvement, which can influence quality-of-life and functional capacity. 1 The mortality rate is increasing in the United States and Europe; as many as 3.08 persons are affected per 1 million. Changes in lungs and heart, pulmonary hypertension are the most significant reasons of death in patients with systemic sclerosis.2ObjectivesTo estimate quality and completeness of medical care in patients with systemic sclerosis in Russia.Methods66 patients included in the study. 61 female and 5 male (mean age: 62,48 ± 10,1), among which there were 24 limited SSc (lSSc) and 42 diffuse SSc (dSSc). All patients fulfilled the ACR/EULAR classification criteria. We estimated percentage of patients, who were examined by basic studies: capillaroscopy, functional lung tests, echocardiography, HRCT, fully immunologic study and right heart catheterization etc. and try to understand reasons of incompleteness of these assessments.ResultsDespite the presence of Raynaud’s phenomenon in 85% of patients, capillaroscopy was performed only in 65.21% of them, examination of the esophagus was performed in only 22.92% of patients, with development of dysphagia in 50% of patients. HRCT was performed in 54.71% (25.76% NSIP, 9.09% UIP), right heart catheterization in 4.17% (signs of pulmonary hypertension according to ECHO detected in 42.86% of patients). FLT were performed in mostly patients (86.34%), but it wasn`t fully: measuring of DLCO was realized only in patients with severe desease (22.92% оf patients). That explains its low mean level (61.37% from normal) as opposed to mean FEV1 (90.7% from normal) and FVC (89.47% from normal) level. Fully immunologic study was performed in 35.42% of patients, despite the fact that different autoantibodies showed up in 72.92% of patients (the most common were: antiScl70 41,67%, ACA 22,92%, ANF 52,08%).ConclusionAccording to the results of the study, we have identified a significant decrease in the quality of medical care despite the clinical recommendations and generally accepted standards. We suppose. that the main reasons for this situation are the complex healthcare problems: insufficient competence of doctors, lack of collaboration between related specialties, unavailability of a number of studies within the framework of free medicine and high cost of these studies for the patients themselves, and the lack of time for communication between the doctor and the patient to explain the seriousness of the disease and the nescessity of all parts of examination and treatment.