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. 2021 Mar;30(3):431-438.
doi: 10.1177/0961203320983445. Epub 2021 Jan 5.

Delayed diagnosis adversely affects outcome in systemic lupus erythematosus: Cross sectional analysis of the LuLa cohort

Anna Kernder  1 , Jutta G Richter  1 , Rebecca Fischer-Betz  1 , Borgi Winkler-Rohlfing  2 , Ralph Brinks  1 , Martin Aringer  3 , Matthias Schneider  1 , Gamal Chehab  1
Affiliations

Delayed diagnosis adversely affects outcome in systemic lupus erythematosus: Cross sectional analysis of the LuLa cohort

Anna Kernder et al. Lupus. 2021 Mar.

Abstract

Objective: Despite 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.

Methods: Information 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.

Results: Mean 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).

Conclusion: In 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.

Keywords: Lupus; Outcome; SLE; delay; diagnosis.

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Conflict of interest statement

Declaration of conflicting interests: The author(s) declared the following potential conflicts of interest with respect to the research, authorship and/or publication of this article: AK, MS, GC, RF-B and JGR received unrestricted grants from GlaxoSmithKline and UCB Pharma for performing the LuLa study. The other authors have declared no conflicts of interest.

Figures

Figure 1.
Figure 1.
Timeline representing the requested time points. T0: onset of symptoms, T1: first physicians visit, T2: diagnosis of SLE, T3: time of the survey (2012): asking about T0, T1, T2 and the outcome of the disease by self-reported questionnaires (BILD, SLAQ, SF-36, SF-12, FSS).
Figure 2.
Figure 2.
Effects of time to diagnosis on disease-related damage (BILD), disease activity (SLAQ), health related quality of life (SF-12) and fatigue in the year 2012. Boxplots presenting two groups of patients: 1 presenting patients that reported a time to diagnosis of less than 6 month from the onset of symptoms (n = 264), 2 presenting patients that reported a time of more than 6 month (n = 321). T-Test for comparison of the two groups. *p < 0.05.
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