Identification of relevant concepts of functioning in daily life in people with systemic lupus erythematosus: A patient Delphi exercise




To identify the most important and relevant concepts of daily functioning from the perspective of patients with systemic lupus erythematosus (SLE).


We conducted a consensus-building, 3-round, electronic mail survey with SLE patients using the Delphi technique. The Delphi technique is a structured communication process with 4 key characteristics: anonymity, iteration with controlled feedback, statistical group response, and informed input. The concepts contained in the answers of the patients were extracted and linked to the International Classification of Functioning, Disability and Health (ICF).


Of the total 225 participants, 194 (86.2%) completed the questionnaires from all 3 Delphi rounds. In total, after the third Delphi round, 307 concepts were identified. Ninety concepts (55 in the domain body functions and structures, 16 in activities and participation, and 19 in environmental factors) were considered relevant by at least 50% of the participants in the third round and linked to the ICF. Twelve concepts were considered important by at least 75% of the participants.


The high number of concepts resulting from this large-scale patient Delphi approach underlines the great variety of SLE patients' problems in daily functioning. The results of this patient Delphi project supplement the findings of our focus-group study in establishing a comprehensive overview of the patient perspective in SLE.