Patient participation in a Clinical Guideline Development for Systemic Lupus Erythematosus

Abstract

Objective: To incorporate patients' perspective in the design of a clinical practice guideline (CPG) for Systemic Lupus Erythematosus in Spain.

Methods: A systematic review (SR) of literature and a Delphi-based consultation to patients were carried out.

Results: From the SR, most relevant health problems are classified as physical, psychological, familial, and socio-economic. Dissatisfaction is mainly due to unmet information needs and limited access to care. In the consultation (n=102), most frequently reported health problems were pain, fatigue, photosensitivity, mood disorders, renal damage, poor concentration, and memory loss. Dissatisfaction with poor coordination between primary and specialized care was reported. Information to improve self-management and on alternative therapies was requested. Relevant topics from both sources were merged and discussed by the guideline development group (including a patient representative) to set the key questions underpinning the CPG.

Conclusion: Patient involvement in CPG development by a combination of methods can enhance patient-centered care by achieving clinical practice responsive to their needs.

Practice implications: Involving patients in CPG development is feasible and useful to improve the advance of Health Services toward patient-centered care. A multicomponent strategy for involvement is suggested to address the gap between the available evidence and contextual current patient needs and preferences.

Keywords: Clinical Practice Guideline; Delphi method; Patient centered outcomes research; Patient involvement; Spain; Systematic review; Systemic Lupus Erythematosus; Unmet needs.