Programme evaluation of Strategies to Embrace Living with Lupus Fearlessly (SELF): an evidence-based digital programme to build and improve lupus self-management skills.

Abstract

Objectives: There 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.

Methods: We 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.

Results: Nearly 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.

Conclusions: SELF 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.