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 - TY - JOUR A1 - Stamm, T. A. A1 - Machold, K. P. A1 - Smolen, J. A1 - Prodinger, Birgit T1 - Life stories of people with rheumatoid arthritis who retired early: how gender and other contextual factors shaped their everyday activities, including paid work JF - Musculoskeletal Care N2 - 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. KW - Rheumatoid arthritis KW - Gender KW - Everyday activities Y1 - 2010 UR - https://doi.org/10.1002/msc.168 VL - 8 IS - 2 SP - 78 EP - 86 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 - Dür, M. A1 - Steiner, G. A1 - Stoffer, M.A. A1 - Fialka-Moser, V. A1 - Kautky-Willer, A. A1 - Dejaco, C. A1 - Ekmekcioglu, C. A1 - Prodinger, Birgit A1 - Binder, A. A1 - Smolen, J. A1 - Stamm, T. A. T1 - Initial evidence for the link between activities and health: Associations between a balance of activities, functioning and serum levels of cytokines and C-reactive protein JF - Psychoneuroendocrinology N2 - Growing evidence shows interrelations of psychological factors, neurological and immunological processes. Therefore, constructs like a balance of activities, the so called “occupational balance”, could also have biological correlates. The aim of this study was to investigate potential associations between occupational balance, functioning, cytokines and C-reactive protein (CRP) in patients suffering from a chronic inflammatory disease like rheumatoid arthritis (RA) and healthy people. Moreover, we wanted to explore potential differences in gender and employment status. A descriptive study in patients with RA and healthy people was conducted using the Occupational Balance-Questionnaire (OB-Quest) and the Short-Form 36 Health Survey (SF-36). Serum levels of cytokines, such as interleukin 6 (IL-6) and 8 (IL-8), interferon alpha (INFα), tumour necrosis factor alpha (TNFα), rheumatoid factor (RF) and of CRP were measured. Descriptive statistics, as well as Mann-Whitney U tests and Spearmen's rank correlation coefficients (rs) were calculated. One-hundred-thirty-two patients with RA and 76 healthy people participated. Occupational balance was associated with functioning, cytokines and CRP. The strongest associations were identified in the unemployed healthy-people sample with cytokines and CRP being within the normal range. For example, the OB-Quest item challenging activities was associated with IL-8 (rs = − 0.63, p = 0.04) and the SF-36 sub-scale bodily pain was associated with IFNα (rs = − 0.69, p = 0.02). The items rest and sleep (rs = − 0.71, p = 0.01) and variety of different activities (rs = − 0.74, p < 0.01) correlated with the SF-36 sub-scale social functioning. Employed and unemployed people differed in their age and CRP levels. Additionally, gender differences were found in two OB-Quest items in that fewer women were able to adapt their activities to changing living conditions and fewer men were overstressed. In conclusion, we found preliminary biological evidence for the link between occupation and health in that the concepts encompassed in the construct of occupational balance were associated with functioning, cytokines and CRP. KW - Autoimmune disease KW - Psychoneuroendocrinology KW - Inflammatory markers KW - Occupational balance KW - Measure KW - Immunology Y1 - 2016 UR - https://doi.org/10.1016/j.psyneuen.2015.12.015 VL - 65 SP - 138 EP - 148 ER - TY - JOUR A1 - Dür, M. A1 - Steiner, G. A1 - Fialka-Moser, V. A1 - Kautzky-Willer, A. A1 - Dejaco, C. A1 - Prodinger, Birgit A1 - Stoffer, M. A. A1 - Binder, A. A1 - Smolen, J. A1 - Stamm, T.A. T1 - Development of a new occupational balance-questionnaire: incorporating the perspectives of patients and healthy people in the design of a self-reported occupational balance outcome instrument JF - Health and Quality of Life Outcomes N2 - Background Self-reported outcome instruments in health research have become increasingly important over the last decades. Occupational therapy interventions often focus on occupational balance. However, instruments to measure occupational balance are scarce. The aim of the study was therefore to develop a generic self-reported outcome instrument to assess occupational balance based on the experiences of patients and healthy people including an examination of its psychometric properties. Methods We conducted a qualitative analysis of the life stories of 90 people with and without chronic autoimmune diseases to identify components of occupational balance. Based on these components, the Occupational Balance-Questionnaire (OB-Quest) was developed. Construct validity and internal consistency of the OB-Quest were examined in quantitative data. We used Rasch analyses to determine overall fit of the items to the Rasch model, person separation index and potential differential item functioning. Dimensionality testing was conducted by the use of t-tests and Cronbach’s alpha. Results The following components emerged from the qualitative analyses: challenging and relaxing activities, activities with acknowledgement by the individual and by the sociocultural context, impact of health condition on activities, involvement in stressful activities and fewer stressing activities, rest and sleep, variety of activities, adaptation of activities according to changed living conditions and activities intended to care for oneself and for others. Based on these, the seven items of the questionnaire (OB-Quest) were developed. 251 people (132 with rheumatoid arthritis, 43 with systematic lupus erythematous and 76 healthy) filled in the OB-Quest. Dimensionality testing indicated multidimensionality of the questionnaire (t = 0.58, and 1.66 after item reduction, non-significant). The item on the component rest and sleep showed differential item functioning (health condition and age). Person separation index was 0.51. Cronbach’s alpha changed from 0.38 to 0.57 after deleting two items. Conclusions This questionnaire includes new items addressing components of occupational balance meaningful to patients and healthy people which have not been measured so far. The reduction of two items of the OB-Quest showed improved internal consistency. The multidimensionality of the questionnaire indicates the need for a summary of several components into subscales. KW - Qualitative research KW - Rasch analysis KW - Occupational science KW - Patient perspective Y1 - 2014 UR - https://doi.org/10.1186/1477-7525-12-45 VL - 12 SP - 45 ER - TY - JOUR A1 - Dür, M. A1 - Binder, A. A1 - Sadloňová, M. A1 - Haider, S. A1 - Stoffer, M. A1 - Smolen, J. A1 - Dejaco, C. A1 - Kautzky-Willer, A. A1 - Prodinger, Birgit A1 - Fialka-Moser, V. A1 - Lovelock, L. A1 - Stamm, T.A. T1 - UPDATE: Life stories and laboratory parameters - the FWF funded GOBI study JF - Wiener Medizinische Wochenschrift KW - GOBI study Y1 - 2012 IS - 12 SP - 10 EP - 13 ER - 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 -