POS0759 THE JOURNEY OF PATIENTS FROM FIRST SYMPTOMS TO DIAGNOSIS OF SYSTEMIC LUPUS ERYTHEMATOSUS (SLE): AN OBSERVATIONAL STUDY
Authors: N. Kapsala, S. Flouda, D. Nikolopoulos, K. Chavatza, A. Pieta, A. Grivas, A. Ntourou, K. Togia, P. Rapsomaniki, T. Gerogianni, D. Tseronis, M. Aggelakos, T. Karageorgas, P. Katsimpri, G. Bertsias, A. Fanouriakis, D. Boumpas
Journal: Annals of the Rheumatic Diseases (2021)

Background: The lack of pathognomonic features poses a considerable challenge in SLE diagnosis. The time from symptom onset to diagnosis has been reported to range from two to six years 1 . Objectives: To document the initial symptoms of the disease and the time lapse until its diagnosis. Methods: We examined 438 patients from the “Attikon” SLE cohort 2 . For diagnosis, we used the classification criteria (ACR, SLICC, EULAR-ACR) or in few cases clinical diagnosis (n=32, 7.3%). Data were collected using patient interviews, in-person clinical visits and medical charts review. Initial symptoms were recorded and determined chronologically using prespecified forms with a list of typical manifestations (skin, joints, renal, nervous system, pleuropulmonary, cardiovascular, anti-phospholipid syndrome) as well as characteristic disease features (Raynaud’s phenomenon, fatigue, fever, sicca symptoms). Questions also included the time between symptom onset and initial physician visit, the time from first medical consultation until first rheumatologist assessment, the time from rheumatologist assessment to SLE definite diagnosis, the number of physicians seen before SLE diagnosis, the specialty of first physician and of diagnosing physician. Information on demographic and clinical characteristics, disease activity and disease damage, was collected both at enrolment and at last follow-up visit. Results: 88.5% of patients were females, mean (±SD) age at diagnosis was 41.9 years ± 15.4 and disease duration was 6.7 ± 7 years. Most common systems involved were joints (94.5%), skin (73.7%), blood (39.2%) and renal (17.5%). At diagnosis, 9.8% of patients were ANA negative. The most common initial symptoms at disease onset were arthritis/arthralgia (74.4%), followed by fatigue (53.1%) and photosensitive rash (50.9%) (Table 1). Among non-criteria features, Raynaud’s phenomenon was reported by 146 patients (33.3%) prior the diagnosis. The median interval between symptoms onset and the SLE diagnosis was 16 months (IQR 5-60). SLE was diagnosed earlier in ANA-positive than -negative patients [median time 14 months (IQR 5-60) vs 36 months (IQR 10.5-84); P=0.1, t-test]. Approximately half of the patients (52.5%) were diagnosed after 12 months from disease onset with only 15.9% diagnosed within 3 months of symptoms presentation. The median lag time between onset of symptoms and the first medical consultation was 2 months (IQR 1-12). Internists were the most common first consultants (27.8%) followed by orthopedists (15.9%), dermatologists (13.6%) and rheumatologists (13.4%). The median interval between the first medical assessment and first rheumatologist evaluation was 3 months (IQR 0-11.5) while the median time from rheumatologist assessment to definite diagnosis was 0 months (IQR 0-4). SLE patients consulted an average of 3 different physicians before the definite diagnosis, which in 95.8% was established by rheumatologists. Conclusion: Approximately 50% of patients were diagnosed with SLE after 12 months from symptom onset with a mean time from symptoms to definite diagnosis almost 4 years. Increasing awareness of internists to SLE and avoidance of strict adherence to ANA as a requirement for diagnosis may improve early diagnosis. Table 1. Initial symptoms prior to diagnosis Symptoms N=438 (% ) Duration * (mean months ±SD ) Arthralgias 326 (74.4) 37.5 ±69.4 Photosensitive rash 223 (50.9) 30.6 ±70.2 Malar rash 168 (38.3) 22.6 ±62 Alopecia 167 (38.1) 19.6 ±54.6 Ulcers 106 (24.2) 16.8 ±54.4 Fever 103 (23.5) 9.3 ±43.8 Raynaud’s phenomenon 146 (33.3) 22.3 ±68.5 Fatigue 233 (53.1) 19.7 ±45.7 *Mean time from symptom onset to established diagnosis References: [1]Nightingale AL, Davidson JE, Molta CT et al. Lupus Science &amp; Medicine 2017; doi:10.1136/lupus-2016-000172. [2]D Nikolopoulos et al. Lupus 2020; doi: 10.1177/0961203320908932. Acknowledgements: This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement No 742390) Disclosure of Interests: None declared