@article{ProdingerCiezaWilliamsetal.2008, author = {Prodinger, Birgit and Cieza, A. and Williams, D.A. and Mease, P. and Boonen, A. and Kerschan-Schindl, K. and Fialka-Moser, V. and Smolen, J. and Stucki, G. and Machold, K. and Stamm, T.}, title = {Measuring health in patients with fibromyalgia: Content comparison of questionnaires based on the International Classification of Functioning, Disability and Health (ICF)}, series = {Arthritis Care \& Research}, volume = {59}, journal = {Arthritis Care \& Research}, number = {5}, pages = {650 -- 658}, year = {2008}, abstract = {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.}, language = {en} } @article{BauernfeindAringerProdingeretal.2009, author = {Bauernfeind, B. and Aringer, M. and Prodinger, Birgit and Kirchberger, I. and Machold, K. and Smolen, J. and Stamm, T.}, title = {Identification of relevant concepts of functioning in daily life in people with systematic Lupus Erythematosus: A patient Delphi exercise}, series = {Arthritis Care \& Research}, volume = {61}, journal = {Arthritis Care \& Research}, number = {1}, pages = {21 -- 28}, year = {2009}, abstract = {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.}, language = {en} } @article{StammVanderGiesenThorstenssonetal.2009, author = {Stamm, T. and Van der Giesen, F. and Thorstensson, C. and Steen, E. and Birrell, F. and Bauernfeind, B. and Marshall, N. and Prodinger, Birgit and Machold, K. and Smolen, J. and Kloppenburg, M.}, title = {Patient perspective of hand osteoarthritis in relation to concepts covered by instruments measuring functioning: a qualitative European multicentre study}, series = {Annals of the Rheumatic Diseases}, volume = {68}, journal = {Annals of the Rheumatic Diseases}, number = {9}, pages = {1453 -- 1460}, year = {2009}, abstract = {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.}, language = {en} } @article{StammMacholdSmolenetal.2010, author = {Stamm, T. A. and Machold, K. P. and Smolen, J. and Prodinger, Birgit}, title = {Life stories of people with rheumatoid arthritis who retired early: how gender and other contextual factors shaped their everyday activities, including paid work}, series = {Musculoskeletal Care}, volume = {8}, journal = {Musculoskeletal Care}, number = {2}, pages = {78 -- 86}, year = {2010}, abstract = {Objective: The aim of the present study was to explore how contextual factors affect the everyday activities of women and men with rheumatoid arthritis (RA), as evident in their life stories. Methods: Fifteen people with RA, who had retired early due to the disease, were interviewed up to three times, according to a narrative biographic interview style. The life stories of the participants, which were reconstructed from the biographical data and from the transcribed 'told story' were analysed from the perspective of contextual factors, including personal and environmental factors. The rigour and accuracy of the analysis were enhanced by reflexivity and peer-review of the results. Results: The life stories of the participants in this study reflected how contextual factors (such as gender, the healthcare system, the support of families and social and cultural values) shaped their everyday activities. In a society such as in Austria, which is based on traditional patriarchal values, men were presented with difficulties in developing a non-paid-work-related role. For women, if paid work had to be given up, they were more likely to engage in alternative challenging activities which enabled them to develop reflective skills, which in turn contributed to a positive and enriching perspective on their life stories. Health professionals may thus use some of the women's strategies to help men. Conclusion: Interventions by health professionals in people with RA may benefit from an approach sensitive to personal and environmental factors.}, language = {en} }