The health engagement of patients with Systemic Lupus Erythematosus


  • D. Mazzoni
  • E. Cicognani
  • A. Cornet
  • B. van Leeuw
  • K. Myllys


Background: Patient engagement is recognized 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 from the point of view and the experiences of SLE patients. Methods: Ten in-depth interviews and four focus groups were conducted with an international sample of SLE patients from different European countries. Transcripts were analysed through thematic content analysis. Findings: Results 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. Discussion: In conclusion, PHE represents an appropriate model to understand the engagement process of SLE patients. In order to meet patients' needs, healthcare providers and patients support groups should consider the specific position of SLE patients, providing adequate and tailored support.





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