Patient-reported outcome measures for systemic lupus erythematosus: an expert Delphi consensus to guide...

Area of Science:

• Rheumatology and Patient-Reported Outcomes
• Health Services Research
• Digital Health Implementation

Background:

• Systemic Lupus Erythematosus (SLE) significantly impacts patient quality of life, social interactions, and work productivity.
• Patient-Reported Outcome Measures (PROMs) are vital for assessing disease burden and guiding SLE management in clinical practice.
• Understanding the current status, appropriateness, and feasibility of PROMs in routine SLE care is essential from both patient and healthcare professional viewpoints.

Purpose of the Study:

• To explore the current situation, appropriateness, and feasibility of using PROMs for monitoring patients with SLE in routine care.
• To gather perspectives from healthcare professionals and patients on the integration of PROMs into clinical practice.
• To identify barriers and facilitators for effective PROM implementation in SLE management.

Main Methods:

• A Delphi methodology was employed, involving a scientific committee, patient focus groups, and literature review.
• A 22-statement questionnaire assessed the use, appropriateness, and feasibility of PROMs in SLE care, covering management and patient empowerment.
• Consensus was defined as agreement among ≥70% of 59 healthcare professionals and 16 SLE patients participating in Delphi rounds.

Main Results:

• Consensus was reached on the value of PROMs for improving SLE management (83%) and the necessity of a digital tool linked to electronic medical records (85%).
• Pain, patient's global assessment, and fatigue were identified as the most frequently used PROMs in clinical practice.
• Key recommendations include implementing multidisciplinary consultations (79%), standardizing tests (88%), integrating pharmacists (70%), and developing telepharmacy programs (72%).

Conclusions:

• Despite identifying pain, fatigue, and global assessment as feasible measures, PROMs are not widely adopted in routine SLE care in Spain.
• The Delphi consensus provides a strategic roadmap for implementing PROMs, which is critical for optimizing the management of Systemic Lupus Erythematosus.
• Patient associations and nurses play a vital role in patient education and empowerment regarding PROMs.