Concepts Important to Persons With Systemic Lupus Erythematosus and Their Coverage By Standard Measures of Disease Activity and Health Status TANJA A. STAMM, 1 BETTINA BAUERNFEIND, 1 MICHAELA COENEN, 2 EVA FEIERL, 1 MONA MATHIS, 1 GEROLD STUCKI, 3 JOSEF S. SMOLEN, 1 KLAUS P. MACHOLD, 1 AND MARTIN ARINGER 1 Objective. To explore the array of concepts important to patients with chronic systemic lupus erythematosus (SLE) and to compare these with instruments assessing disease activity, damage, and health status. Methods. We conducted a qualitative focus-group study of patients with SLE concerning their problems in daily functioning. The group sessions were tape recorded, transcribed, and divided into meaning units. The concepts contained in these meaning units were extracted and linked to the International Classification of Functioning, Disability and Health (ICF). We then compared the concepts from the focus groups with those concepts covered by SLE activity scores, the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI), and the Short Form 36 Health Survey (SF-36). Results. A total of 92 concepts emerged from 5 focus groups; of these, 28 related to body functions and structures, 24 to activities and participation, and 25 to environmental factors. Two concepts were linked to the health condition itself and 6 to personal factors. Seven were not covered by the ICF. Of the 28 concepts regarding body functions and structures, 24 (86%) were covered by the combination of activity scores and the SDI. The SF-36 also addressed 3 of these concepts and contained 9 (38%) of 24 concepts in activities and participation. Conclusion. Although the combination of SLE activity scores, SDI, and SF-36, as suggested for SLE studies, well covers body functions and structures and includes a significant portion of problems regarding activities and participation, neither environmental nor personal factors are covered at all. KEY WORDS. Systemic lupus erythematosus; International Classification of Functioning, Disability and Health; Patient perspective. INTRODUCTION The World Health Organization’s International Classifica- tion of Functioning, Disability and Health (ICF) (1) is a tool used to better characterize the full array of problems a patient faces when affected with disease (2– 4). Specifying these problems is a particular challenge in a disease such as systemic lupus erythematosus (SLE) because of the wide variety of organ systems involved and its variable activity and severity. SLE is a prototypical autoimmune disease with an inci- dence and prevalence varying considerably in different countries (5,6). The burden of the disease is elevated Supported in part by a restricted grant from the Medical Science Foundation of the Mayor of the City of Vienna, Austria. 1 Tanja A. Stamm, PhD, MSc, MBA, Mag Phil, OTR, Bet- tina Bauernfeind, Mag Rer Nat, Eva Feierl, MD, Mona Ma- this, OTR, Josef S. Smolen, MD, Klaus P. Machold, MD, Martin Aringer, MD: Vienna Medical University, Vienna, Austria; 2 Michaela Coenen, MPH, Dipl Psych: ICF Research Branch of the WHO Collaborating Center for the Family of International Classifications at the German Institute of Med- ical Documentation and Information, Munich, Germany; 3 Gerold Stucki, MPH, Dipl Psych: ICF Research Branch of the WHO Collaborating Center for the Family of Interna- tional Classifications at the German Institute of Medical Documentation and Information, and Ludwig-Maximilians- University, Munich, Germany. Address correspondence to Tanja A. Stamm, PhD, MSc, MBA, Mag Phil, OTR, Vienna University, Department of Internal Medicine III, Division of Rheumatology, Wa ¨ hringer Gu ¨ rtel 18-20, A-1090 Vienna, Austria. E-mail: Tanja.Stamm@ meduniwien.ac.at. Submitted for publication December 19, 2006; accepted in revised form March 20, 2007. Arthritis & Rheumatism (Arthritis Care & Research) Vol. 57, No. 7, October 15, 2007, pp 1287–1295 DOI 10.1002/art.23013 © 2007, American College of Rheumatology ORIGINAL ARTICLE 1287