Concepts important to persons with systemic lupus erythematosus and their coverage by standard measures of disease activity and health status

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.