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From first symptoms to diagnosis of systemic lupus erythematosus: mapping the journey of patients in an observational study
N.N. Kapsala1, D.S. Nikolopoulos2, S.P. Flouda3, A.P. Chavatza4, D.D. Tseronis5, M.D. Aggelakos6, P.P. Katsimbri7, G.K. Bertsias8, A.C. Fanouriakis9, D.T. Boumpas10
- Attikon University Hospital of Athens, Rheumatology and Clinical Immunology, Medical School, National and Kapodistrian University of Athens, Greece.
- Attikon University Hospital of Athens, Rheumatology and Clinical Immunology, Medical School, National and Kapodistrian University of Athens, and Laboratory of Immune Regulation and Tolerance, Autoimmunity and Inflammation, Biomedical Research Foundation of the Academy of Athens, Greece.
- Attikon University Hospital of Athens, Rheumatology and Clinical Immunology, Medical School, National and Kapodistrian University of Athens, Greece.
- Attikon University Hospital of Athens, Rheumatology and Clinical Immunology, Medical School, National and Kapodistrian University of Athens, Greece.
- Attikon University Hospital of Athens, Rheumatology and Clinical Immunology, Medical School, National and Kapodistrian University of Athens, Greece.
- Attikon University Hospital of Athens, Rheumatology and Clinical Immunology, Medical School, National and Kapodistrian University of Athens, Greece.
- Attikon University Hospital of Athens, Rheumatology and Clinical Immunology, Medical School, National and Kapodistrian University of Athens, Greece.
- Rheumatology, Clinical Immunology and Allergy, University of Crete School of Medicine, Heraklion, Crete, and Institute of Molecular Biology and Biotechnology, Foundation of Research and Technology-Hellas, Heraklion, Crete, Greece.
- Attikon University Hospital of Athens, Rheumatology and Clinical Immunology, Medical School, National and Kapodistrian University of Athens, and Department of Rheumatology, Asklepieion General Hospital, Voula, Athens, Greece. afanour@med.uoa.gr
- Attikon University Hospital of Athens, Rheumatology and Clinical Immunology, Medical School, National and Kapodistrian University of Athens; Laboratory of Immune Regulation and Tolerance, Autoimmunity and Inflammation, Biomedical Research Foundation of the Academy of Athens, Greece, and Medical School, University of Cyprus, Nicosia, Cyprus.
CER15430
2023 Vol.41, N°1
PI 0074, PF 0081
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PMID: 35485411 [PubMed]
Received: 18/12/2021
Accepted : 07/03/2022
In Press: 20/04/2022
Published: 23/01/2023
Abstract
OBJECTIVES:
Although increased awareness for systemic lupus erythematosus (SLE) has reduced diagnostic delay, the average time from symptom onset to diagnosis is still long, potentially resulting in adverse outcomes. We mapped the journey of lupus patients from onset of symptoms to disease diagnosis.
METHODS:
We carried out an observational study of 275 SLE patients with disease duration <6 years. Data were collected from patient charts, interviews and in-person clinical visits. Total delay was divided in i) time from symptom onset to rst physician visit, ii) time from rst visit to assessment by rheumatologist, and iii) time from initial rheumatologist assessment to nal diagnosis. Early diagnosis was de ned as diagnosis within 6 months from symptom onset.
RESULTS:
Most common initial symptoms were arthritis/arthralgia (74.5%) and rashes (61.8%). Median (IQR) total delay between symptom onset and SLE diagnosis was 24 (54) months. An “early” diagnosis was achieved only in 28.4% of patients, while 55.6% were diagnosed after 12 months, with patients consulting an average of 3 different physicians before reaching diagnosis. Oral ulcers (OR 3.55; 95% CI 1.45–8.70) and malar rash (OR 1.99; 95% CI 1.00–3.94) as initial symptoms, and rst medical assessment by orthopaedic (OR 5.18; 95% CI 1.47–18.20) were independently associated with a delayed diagnosis. The latter was also associated with increased SDI at the time of diagnosis (OR 2.42; 95% CI 1.03–5.69), attributed mainly to neuropsychiatric and thrombotic events.
CONCLUSIONS:
Diagnosis of SLE is delayed by more than 6 months in three quarters of patients and is associated with more damage accrual.
