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- Rheumatoid arthritis (2)
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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.
Objective
Functioning is an important outcome in hand osteoarthritis (OA). The heterogeneity of patient‐reported outcome measures (PROMs) available challenges the direct comparability of information collected by these instruments. This study aimed to examine whether it is possible to achieve metric equivalence of PROMs commonly used to measure functioning in people with hand OA.
Methods
A secondary analysis of data from 253 persons who participated in the Vienna Hand Osteoarthritis Cohort Study was conducted applying the Rasch measurement model. Participants completed the Health Assessment Questionnaire, the Australian/Canadian Index for Hand Osteoarthritis, the Functional Index for Hand Osteoarthritis (FIHOA), and the Cochin Scale. The assumptions of stochastic ordering, local independence, unidimensionality, and invariance were tested for each scale independently before the scales were co‐calibrated onto a common metric.
Results
Except for the FIHOA, all measures indicated issues of local dependency in the initial analyses. After accommodating those with testlets, all scales satisfied the assumptions of the Rasch model (χ2 > 0.05). Marginal misfit in 2 items was found in the FIHOA, but this did not disturb person estimates. As the 4 scales form a common metric that satisfies the assumptions of the Rasch model, the scores can be equated.
Conclusion
The scores of the 4 hand function measures can be transformed to a common 0–100 metric, such that scores can be interchanged. A user‐friendly transformation table enables clinicians and researchers to have access to the common metric by simply adding up the total score for each instrument and identifying the corresponding transformed score on the common metric.
Introduction:
Occupation-based approaches are a hallmark of excellence in occupational therapy practice. This article focuses on the disjuncture between how women with rheumatoid arthritis go about their daily lives, that is to say their occupations, and what is addressed during routine visits at a specialized rheumatology outpatient clinic.
Method:
Institutional ethnography was employed as a method of inquiry to identify the occupations and related issues that were or were not accounted for in health records and addressed within institutional processes. Interviews and participant observations were conducted with seven women with rheumatoid arthritis who were mothers. Hospital records were analysed as texts mediating between the women's daily lives and the rheumatology outpatient clinic.
Findings:
The analysis revealed that despite the diversity in the ways that the women managed their daily lives, the things that they did were viewed, understood, and addressed only within the boundaries of the standardizing relations that ruled practice in this clinical setting. Institutional processes grounded in biomedical concepts such as functional status or disease activity, as well as clinical assessments that depict these concepts, both shape and limit opportunities for occupational therapists to advance and enact occupation-based practice.
Conclusion:
In this setting, the complexity of the participants' daily lives and the occupations they engage in remain unaddressed.
Negotiating disability in everyday life: Ethnographical accounts of women with rheumatoid arthritis
(2014)
Purpose: Drawing on data from a larger study, the aim of this paper is to illuminate how the everyday doings of women with disabilities are coordinated to and shaped by organizational processes and social context, particularly as these relate to the potential of being labelled disabled.
Methods: An institutional ethnography was conducted with seven Austrian women diagnosed with rheumatoid arthritis (RA). Interviews and participant observations were conducted, and texts about the historical development of disability policies were identified. Data analysis included grouping similar doings of participants together to subsequently explore links between what the women did and how their doings are shaped by disability policies and the social context.
Results: The women, who participated in this study, spent time and effort to keep the disease invisible, resist disability and negotiate a disability pass. By drawing upon the historical development of Austrian disability policies, the interpretation reveals how this development infiltrates into participants’ lives and shapes their everyday doing.
Conclusion: This study furthers understanding of how broader policies and practices, shaped over historical time, infiltrate into the daily lives of women with disabilities. It illustrates how full participation may not necessarily be a lived reality for people with disabilities at this point in Austria.
Implications for Rehabilitation
Maximising full participation for people with rheumatoid arthritis is important.
This requires focusing not only on the bodily health of people with rheumatoid arthritis but also on their interaction with the social, cultural and political context in their daily lives.
This requires also understanding how knowledge about disability is passed on from previous generations.
Objectives: Instruments to assess functioning in patients with FM vary considerably in their content and are often symptom‐specific. This study aimed to examine whether it is feasible to construct a psychometric‐sound clinical instrument to measure functioning in FM based on the Brief ICF‐Core‐Set for chronic widespread pain (CWP).
Methods: Two hundred and fifty six people with FM completed the Brief ICF‐Core‐Set. The Rasch model was used for analysis. Once ordering of response options of ICF categories was ensured, the following properties were studied: fit of the ICF categories to the Rasch model, the targeting between ICF categories and a person’s abilities, unidimensionality, and reliability.
Results: Six ICF categories were rescored due to disordered thresholds. Five ICF categories were removed due to high model‐misfit and differential item functioning (DIF) for gender. Scores from 46 participants were excluded due to extreme scores. The ICF categories included display consistency with an underlying unidimensional construct, are free of DIF for age, disease duration and gender, display excellent overall reliability, and cover a range of functioning difficulties.
Conclusions: This study illustrates that it is possible to measure functioning as a unidimensional construct based on selected ICF categories from the components body functions, as well as activities and participation of the Brief ICF‐Core‐Set for CWP in patients with FM.
Objective: To explore patients’ and health professionals’ views of outpatient rehabilitation services for patients with rheumatoid arthritis in 3 different rheumatology sites across Europe.
Methods: A qualitative multi-method study was conducted with patients and health professionals in Vienna (Austria), Gothenburg (Sweden) and Leeds (UK). Data collection was carried out during focus groups with patients and health professionals. Patients’ hospital records were integrated into the analysis. Data were analysed for site and findings were compared across sites.
Results: A total of 20 patients and 20 health professionals participated in 12 focus groups. Although the 3 sites were all publicly funded university clinics, there were differences between sites regarding the structure and content of rehabilitation services. The themes that emerged in the focus groups were: referrals; continuity in rehabilitation; information provided to patients; patients’ organizations; documentation and communication amongst health professionals; interface between primary and specialist care; and prescription practices. Most themes were addressed at all 3 sites, but there were variations in the specifics within themes.
Conclusion: Integration of patients’ and health professionals’ views on how rehabilitation services are coordinated and how (parts of) processes are set up elsewhere provide valuable information for the further optimization of rehabilitation services.
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.
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.