Background and aims Patient engagement is recognised as a crucial component of high-quality healthcare services. Among rheumatic diseases, Systemic Lupus Erythematosus (SLE) appears particularly challenging for the engagement of patients in their own care. According to the Patient Health Engagement (PHE) model, patient engagement is a dynamic phenomenon that proceeds through four experiential positions (blackout, arousal, adhesion, and eudaimonic project). The aim of the present study was to describe the engagement process through the experiences of SLE patients.

Methods Ten in-depth interviews and four fous group were conducted with an international sample of SLE patients from different European countries. Interviews focused on several aspect of patients‘ life with SLE and their relationship with the healthcare system. Transcripts were analysed through thematic content analysis.

Results The mean age of the participants to the study was 40.6 years (±10.0). The average years since diagnosis were 15.5 (SD=8.6) with great variability in terms of disease manifestations. Findings showed that a fully engaged patient results from reframing emotional, cognitive, and behavioural dimensions. The advances along the process depends on how the patient succeeds in each position.

Conclusions PHE represents a appropriate model to understand the engagement process of SLE patients. In order to meet patients needs, healthcare providers should consider the specific position of SLE patients, providing adequate and tailored support.