Lupus & antiphospholipid syndrome

High disease activity persists in adults with childhood-onset lupus

Lupus Sci MedPublished Retrospective cohort study

Authors' conclusion

Adults with cSLE entered adult follow-up with higher baseline damage and continued to experience a higher longitudinal disease activity burden than patients with aSLE.

Study context

Population
Adults with SLE enrolled in the Australian Lupus Registry and Biobank 2011–2022 with ≥12 months of data; median (IQR) age 39 (30–51) years; 88.1% female68 (13%) cSLE
Participants
519 adults
Exposure
Childhood-onset SLE vs adult-onset SLE, in adulthood
  • cSLEn = 68
Outcome
Key outcomes: SLEDAI-2K AMS, time in Lupus Low Disease Activity State (LLDAS) and damage accrual
Methodological detailsnational registry (Australian Lupus Registry and Biobank), longitudinal, Bivariate tests for group comparisons
  • National registry (Australian Lupus Registry and Biobank)
  • Longitudinal
  • Bivariate tests for group comparisons

Main finding

As reported in the abstract

Disease activity, SLEDAI-2K AMS · median (IQR) follow-up 5 (2.6-9.3) years

cSLE

5.0

median · IQR 3.0–6.4

aSLE

3.6

median · IQR 1.9–5.1

P < 0.001

Observational data: associations, not effects.

Further findings

Achievement of LLDAS-50

P = 0.036

Baseline damage (SDI≥1)

P = 0.05

Baseline renal involvement

P < 0.001

High Disease Activity Status (SLEDAI-2K ≥10 ever)

cSLE more likely to be in High Disease Activity Status

Damage accrual, flare rates and quality of life during follow-up

Similar between groups

Original publication

High disease activity persists in adults with childhood-onset lupus. Lupus Sci Med. Published 5 August 2026. doi:10.1136/lupus-2026-002138

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