Abstract
ObjectiveDespite increased physician’s awareness and improved diagnostic and serological testing in the recent years, the interval between the initial symptoms and the diagnosis of Systemic lupus erythematosus (SLE) is still very long. Our aim was to study this delay and its association to the outcome of the disease.MethodsInformation on demographics, onset of first symptoms, first physicians visit and time of diagnosis was assessed by self-reported questionnaires among SLE patients in Germany (LuLa cohort, n = 585) in the year 2012. Disease activity (Systemic Lupus Activity Questionnaire; SLAQ), disease related damage (Brief Index of Lupus Damage; BILD), health related quality of life (Short Form 12) and fatigue (FSS) were chosen as proxies for outcome. Linear regression analysis was used to analyze the association of the delay in diagnosis to the outcome, adjusted for age, disease duration and sex.ResultsMean duration between the onset of symptoms and the diagnosis of SLE was 47 months (SD 73). The longer the time to diagnosis, the higher the disease activity (β = 0.199, p < 0.0001), the disease-related damage (β = 0.137, p = 0.002) and fatigue (β 0.145, p = 0.003) and the lower the health-related quality of life (physical β = −0.136, p = 0.004, mental β = −0.143, p = 0.004).ConclusionIn systemic lupus erythematosus, longer time to diagnosis was associated with worse outcome. Concepts in care with the intention to shorten the time to diagnosis are needed to improve the long-term outcome of the disease.
Highlights
The initial symptoms of systemic lupus erythematosus are often nonspecific and mimic other medical conditions, increasing the risks for diagnostic delay.[1]
Ozbek et al reported a mean delay of 21.8 Æ 30.3 months in 136 Turkish Systemic lupus erythematosus (SLE) patients in 2003, with arthralgia being the most common symptom (60%) at the time of diagnosis and Sawah et al described a delay of 67.2 Æ 87.5 months in 2015 in a US-cohort (n 1⁄4 827).[3]
Female Age Disease duration Symptoms to first physicians visit Physicians visit to diagnosis Symptoms to diagnosis Physical functioning (SF 36 PFI) Physical quality of life (SF-12 PCS) Mental quality of life (SF-12 MCS) Disease activity (SLAQ) Damage (BILD) Fatigue (FSS) Number of comorbidities Number of lupus medication Number of other medication Prednisolone 7,5 mg/d Prednisolone > 7,5 mg/d that patients with cerebral and mental involvement at onset (neuropsychiatric SLE (NPSLE), n 1⁄4 76) had longer delays in diagnosis
Summary
The initial symptoms of systemic lupus erythematosus are often nonspecific and mimic other medical conditions, increasing the risks for diagnostic delay.[1] The heterogeneity of possible manifestations makes early diagnosis and subsequent disease management more difficult and can delay effective treatment. In a study of 121 SLE patients in the UK, 70% of the participants stated that they had initially received another diagnosis. Ozbek et al reported a mean delay of 21.8 Æ 30.3 months in 136 Turkish SLE patients in 2003, with arthralgia being the most common symptom (60%) at the time of diagnosis and Sawah et al described a delay of 67.2 Æ 87.5 months in 2015 in a US-cohort (n 1⁄4 827).[3]
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