Relevant concepts of functioning for patients with systemic lupus erythematosus identified in a Delphi exercise of experts and a literature review.
OBJECTIVE
To identify in a Delphi exercise of international systemic lupus erythematosus (SLE) experts and a systematic literature review the most relevant concepts that impact on the functioning of SLE patients.


METHODS
Sixty SLE experts participated in all rounds of a 3-round e-mail-based Delphi exercise; for the literature review, 573 manuscripts out of 4 decades were analyzed. Concepts in the first Delphi round and from the literature were linked to categories of the International Classification of Functioning, Disability and Health (ICF). Categories were voted on individually in a feedback-driven Delphi process, and ranked by frequency in the literature, respectively.


RESULTS
In the Delphi exercise, at least 80% of the participants found 30 categories of the domain body functions and structures, and 3 categories in the domain activities and participation and environmental factors important. In general, the categories identified in the literature review overlapped with those in the Delphi exercise with regard to body functions and structures, while showing some differences in other domains. The highest agreement concerned the ICF categories "joints," "skin and related structures," "fatiguability," "immunological system functions," and "handling stress and other psychological demands." Agreement with an earlier patient Delphi exercise was considerable.


CONCLUSIONS
A 3-step Delphi exercise of 60 SLE experts and a literature review identified a wide spectrum of relevant ICF categories with impact on functioning of SLE patients. The categories derived from these approaches overlap with each other and with those of a patient Delphi exercise.
University Medical Center Carl Gustav Carus, Technische Universitaet of Dresden, Dresden, Germany.
Nicolai
N
Leuchten
Bettina
B
Bauernfeind
Johannes
J
Kuttner
Tanja
T
Stamm
Josef S
JS
Smolen
David S
DS
Pisetsky
Martin
M
Aringer
D000203:Activities of Daily Living; D003697:Delphi Technique; D004185:Disability Evaluation; D006233:Persons with Disabilities; D006305:Health Status Indicators; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000175:diagnosis* / Q000503:physiopathology / Q000523:psychology