Abstract

Objectives: To develop recommendations for monitoring patients with systemic lupus erythematosus (SLE) in clinical practice and observational studies and to develop a standardized core set of variables to monitor SLE.

Methods: We followed the EULAR standardised procedures for guideline development. The following techniques were applied: nominal group, Delphi surveys for priorisation, small group discussion, systematic literature review, and two Delphi rounds to obtain agreement. The panel included rheumatologists, internists, dermatologists, a nephrologist and an expert related to national research agencies. The level of evidence and grading of recommendations were determined according to the Levels of Evidence and Grades of Recommendations of the Oxford Centre for Evidence-Based Medicine.

Results: Ten recommendations have been developed, including the following aspects: patient assessment, cardiovascular risk factors, other risk factors (osteoporosis, cancer), infection risk (screening, vaccination, monitoring), frequency of assessments, laboratory tests, mucocutaneous involvement, kidney monitoring, neuropsychological manifestations and ophthalmology assessment.

A “core set” of minimal variables for the assessment and monitoring of SLE patients in clinical practice was developed that included some of the recommendations. In addition to the recommendations, indications for specific organ assessments that were viewed as part of good clinical practice were discussed and included in the flow chart.

Conclusions: A set of recommendations for monitoring SLE patients in routine clinical practice has been developed. The use of a standardized core set to monitor SLE patients should facilitate clinical practice, as well as the quality control of care for SLE patients, and the collection and comparison of data in observational studies.