Lupus & antiphospholipid syndrome

Impact of an online lupus self-management programme in an established, population-based cohort of adults with diagnosed SLE: a mixed-methods study

Lupus Sci MedPublished Mixed-methods study

Authors' conclusion

SELF showed promising results for reducing disease activity, pain and fatigue among specific subgroups of participants with SLE.

Study context

Population
Adults with SLE from the population-based Georgians Organized Against Lupus (GOAL) cohort, Georgia12 also interviewed
Participants
221 adults
Outcome
Patient-reported outcomes:
  • Disease activity
  • Pain
  • Fatigue
  • Self-efficacy
Follow-up
90-day follow-up
Methodological detailsconvergent mixed-methods design, RE-AIM evaluation framework, single-group pre-post
  • Convergent mixed-methods design
  • RE-AIM evaluation framework
  • Single-group pre-post

Main finding

As reported in the abstract

Disease activity change in subgroups

Black participants (n=193): significantly lower disease activity, 95% CI

−1.59 to −0.04

High fatigue (n=164): significantly lower disease activity, 95% CI

−1.85 to −0.11

Below 100% federal poverty level (n=74): significantly lower disease activity, 95% CI

−3.44 to −0.18

Further findings

Self-efficacy in managing medications · 90-day follow-up

Mean reduction (95% CI)
SELF−1.38 (−2.50 to −0.26)
  • Self-efficacy in managing medications: Cohen's d=−0.14; qualitative data suggested greater awareness of skill gaps

Fatigue subgroups, multiple measures · 90-day follow-up

High-fatigue participants improved on multiple measures; low-fatigue group showed unexpected declines that may reflect baseline confounding

Original publication

Impact of an online lupus self-management programme in an established, population-based cohort of adults with diagnosed SLE: a mixed-methods study. Lupus Sci Med. Published 7 May 2026. doi:10.1136/lupus-2025-001711

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