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OC.34 From first symptom to diagnosis: initial symptoms and delays in systemic sclerosis from the early systemic sclerosis longitudinal assessment registry

jsrd · 2026-06-05 · canonical JSON source

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Introduction Various studies have examined the delay between the initial symptoms and clinical manifestations of systemic sclerosis (SSc), as well as its association with high morbidity and mortality rates. However, a key limitation of these studies is their reliance on the retrospective assessment of patients’ symptoms and clinical findings. Evaluating patients with a shorter duration since SSc diagnosis may yield more accurate and reliable results. This study aims to assess the initial symptoms and clinical manifestations of patients diagnosed with systemic sclerosis (SSc) within the past three years.Material and Methods 180 SSc patients diagnosed within the past three years were included from the early Systemic SclerOsis Longitudinal Assessment Registry (SOLAR) in the study. Sociodemographic characteristics and clinical features were retrieved from the database, while additional study-related data were collected using patient-reported forms provided from participating centres.Results The sociodemographic and the data related to the time process of the disease diagnosis are presented in table 1. The most common initial symptom leading to hospital admission was isolated Raynaud’s phenomenon (RP), observed in 49.7% of patients. The other frequently reported symptoms were arthralgia (12.4%), cough/dyspnea (7.9%), puffy hand (7.3%), and RP with stiffness of skin or puffy hand (6.7%) (figure 1). The most commonly consulted departments at the initial hospital visit were internal medicine (41%), primary care physicians (15.6%), dermatology (8.3%), rheumatology (7.8%), and pulmonology (6%). The median time to hospital admission was significantly longer in patients presenting with RP as the initial manifestation compared to those with non-RP symptoms (5.48 vs. 1.03 months; p<0.01). The time to diagnosis was more prolonged in patients with RP at disease onset than in those with non-RP symptoms (16.72 vs. 5.97 months; p<0.01). Notably, 61.8% of patients reported experiencing a delay in the diagnosis of SSc. The most commonly reported reasons for this delay were patients underestimating the significance of their symptoms (51.3%), failure of healthcare providers to refer patients to appropriate specialists (21.5%), and difficulties in obtaining appointments and accessing rheumatology specialists (12%).Conclusions RP is the most frequent initial symptom leading to hospital admission among SSc patients. However, delays in both hospital admission and diagnosis are more pronounced in patients presenting with RP compared to those with non-RP symptoms. These findings underscore the need for awareness regarding the clinical significance of RP as an early indicator of SSc. Educating the specialists on recognising and managing RP could improve early detection and timely diagnosis of SSc.On behalf of the SOLAR coauthors: Serdar Can Güven, Orhan Kücükşahin, Şükran Erten, Cemal Bes, Tahsin Murat Turgay, Orhan Zengin, Ali Şahin, Ahmet Karataş, Atalay DoğruAbstract OC.34 Table 1The sociodemographic, clinical features and diagnosis process of SSc patients (n=180)Abstract OC.34 Figure 1The first symptoms leading to hospital admission