ArticleLupus science & medicine2025
Programme evaluation of Strategies to Embrace Living with Lupus Fearlessly (SELF): an evidence-based digital programme to build and improve lupus self-management skills.
Article in Lupus science & medicine, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
2 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Assessing and improving communication strategies among healthcare providers and African American individuals with systemic lupus: a scoping review.BMC rheumatology · 2026Pooled it
- Impact of an online lupus self-management programme in an established, population-based cohort of adults with diagnosed SLE: a mixed-methods study.Lupus science & medicine · 2026Article
Corrections and comments
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Authors and funding
15 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesThere is increasing recognition of the need for patient-centred lupus self-management (SM) programmes to improve outcomes. The purpose of this manuscript is to describe the underlying methodology and initial pilot results of Strategies to Embrace Living with Lupus Fearlessly (SELF): an evidence-based digital SM intervention designed for individuals with lupus based on the Transtheoretical Model of Behaviour Change.
methodsWe describe pilot testing and initial feasibility and acceptability results of SELF among individuals with lupus. Participants for the 90-day pilot test were recruited through three Centers for Disease Control & Prevention-funded lupus registry sites across the USA and the Lupus Foundation of America's constituency, including a diverse sociodemographic lupus population, using varied sources. Feasibility, acceptability and preliminary impact were assessed using data on enrolment, retention, ease of utilisation and satisfaction with SELF's features, changes in readiness for SM behaviours, impact on patient-reported outcomes (eg, fatigue interference) and user feedback.
resultsNearly 80% of participants had moderate or high skill gaps at programme intake (ie, were in an early stage of change for a key SM skill), underscoring the importance of digital SM programmes like SELF. Among those who completed the programme, almost 60% of participants closed a skill gap by mastering one or more SM skills. Significant effects on patient-provider interactions and fatigue interference were also noted, highlighting a need for future investigation. Qualitative data were mostly positive in terms of feasibility and acceptability, with specific recommendations for future improvement.
conclusionsSELF utilisation and pilot data indicate that SELF is generally feasible and acceptable, particularly among those needing to build lupus SM skills. Future work will explore ways to improve the digital SM intervention and reduce barriers to initial and ongoing engagement.
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