TY - JOUR A1 - Bauernfeind, B. A1 - Aringer, M. A1 - Prodinger, Birgit A1 - Kirchberger, I. A1 - Machold, K. A1 - Smolen, J. A1 - Stamm, T. T1 - Identification of relevant concepts of functioning in daily life in people with systematic Lupus Erythematosus: A patient Delphi exercise JF - Arthritis Care & Research N2 - Objective To identify the most important and relevant concepts of daily functioning from the perspective of patients with systemic lupus erythematosus (SLE). Methods 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). Results 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. Conclusion 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. KW - Systemic lupus erythematosus KW - Patient Delphi exercise KW - Functioning in daily life Y1 - 2009 UR - https://doi.org/10.1002/art.24165 VL - 61 IS - 1 SP - 21 EP - 28 ER - TY - JOUR A1 - Prodinger, Birgit A1 - Cieza, A. A1 - Williams, D.A. A1 - Mease, P. A1 - Boonen, A. A1 - Kerschan-Schindl, K. A1 - Fialka-Moser, V. A1 - Smolen, J. A1 - Stucki, G. A1 - Machold, K. A1 - Stamm, T. T1 - Measuring health in patients with fibromyalgia: Content comparison of questionnaires based on the International Classification of Functioning, Disability and Health (ICF) JF - Arthritis Care & Research N2 - Objective To analyze the content of outcome measures commonly used to assess health in patients with fibromyalgia (FM) by linking the items of the instruments with the International Classification of Functioning, Disability and Health (ICF) in order to evaluate the adequacy of currently used measures. Methods Questionnaires used in FM were identified in a structured literature search. All concepts included in the items of the questionnaires were linked to ICF categories, according to previously published linking rules, by 2 independent health professionals. The percentages of linked ICF categories addressing the different ICF components were calculated. Results Generic and symptom‐specific instruments were included. From the 296 items contained in all 16 instruments, 447 concepts were extracted and then linked to 52 ICF categories of the component body functions, 1 category of the component body structure, 40 categories of the component activities and participation, and 9 categories of the component environmental factors. More than half of the concepts identified were linked to body function, fewer were linked to activities and participation, and only concepts of 4 instruments were linked to the ICF component environmental factors. Conclusion Many concepts were linked to the categories in the ICF component body functions. While linking to the broad category, purportedly similar instruments often covered widely varying areas of function at more fine‐grained levels of detail. Some categories, such as environmental factors, were barely covered by any of the instruments and might constitute an important aspect of health deserving better coverage and future development. KW - fibromyalgia Y1 - 2008 UR - https://doi.org/10.1002/art.23559 VL - 59 IS - 5 SP - 650 EP - 658 ER - TY - JOUR A1 - Stamm, T. A1 - Van der Giesen, F. A1 - Thorstensson, C. A1 - Steen, E. A1 - Birrell, F. A1 - Bauernfeind, B. A1 - Marshall, N. A1 - Prodinger, Birgit A1 - Machold, K. A1 - Smolen, J. A1 - Kloppenburg, M. T1 - Patient perspective of hand osteoarthritis in relation to concepts covered by instruments measuring functioning: a qualitative European multicentre study JF - Annals of the Rheumatic Diseases N2 - Objective: To explore whether the concepts important to patients with hand osteoarthritis (OA) are covered by the most commonly used instruments measuring functioning. Method: A qualitative multicentre study using a focus group technique was performed in five European countries: Austria, The Netherlands, Norway, Sweden and the United Kingdom. The qualitative data analysis followed a modified form of “meaning condensation” and used the International Classification of Functioning, Disability and Health (ICF) as a theoretical framework. Finally, the concepts from the focus groups were compared with the content of the most commonly used instruments which had been identified in an earlier theoretical analysis. Results: Fifty-six people (51 women, mean (SD) age 62.7 (7.9) years) with hand OA participated in this study in two focus groups per centre. 63 concepts were extracted from the focus groups. Twenty-one (33%) of the 63 concepts were covered by at least one instrument. Psychological consequences, different qualities of pain, aesthetic changes and leisure activities are important concepts from the focus groups which were not covered by the instruments. The qualitative analysis revealed detailed descriptions of pain-concerning sensations, levels and a certain relation to activity, none of which were fully represented in the instruments routinely used. Conclusion: It was possible to combine the concepts of the focus groups from each centre into a common qualitative analysis. The concepts important to people with hand OA are not fully represented in the most commonly used instruments. KW - Hand osteoarthritis KW - Measuring functioning KW - Qualitative multicentre study Y1 - 2009 UR - http://dx.doi.org/10.1136/ard.2008.096776 VL - 68 IS - 9 SP - 1453 EP - 1460 ER -