Patient perspective of hand osteoarthritis in relation to concepts covered by instruments measuring functioning: a qualitative European multicentre study

Stamm, Tanja; Giesen, Florus van der; Thorstensson, Carina A; Steen, Eldri; Birrell, Fraser; Bauernfeind, Bettina; Marshall, Nicola; Prodinger, Birgit; Machold, Klaus; Smolen, Josef S.; Kloppenburg, Margreet

doi:10.1136/ard.2008.096776

Cited by 76 publications

(119 citation statements)

References 35 publications

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“…9 It can also integrate different viewpoints including that of the patient and has already been used in qualitative studies for this purpose. 10,11 Therefore, it seems suitable that the ICF serves as a basis for a systematic and comprehensive exploration of the persons' perspective in SCI. The objective of this study is to explore the aspects of functioning and disability that are relevant to individuals with SCI, using a comprehensive ICF-based approach.…”

Section: Introductionmentioning

confidence: 99%

The individual experience of functioning and disability in Switzerland—patient perspective and person-centeredness in spinal cord injury

et al. 2011

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Study design: Qualitative, multi-center study. Objectives: The objective of this study is to explore the aspects of functioning and disability that are relevant to individuals with spinal cord injury (SCI), using a comprehensive approach based on the International Classification of Functioning, Disability and Health (ICF). Methods: Forty-nine people with SCI from early post-acute and long-term rehabilitation settings participated in nine focus groups. Five open-ended questions based on the ICF were used to initiate discussion about relevant Body Functions and Structures, Activities and Participation, Environmental and Personal Factors. The focus groups were audiotaped and the recording was transcribed verbatim. Qualitative analyses included the identification, extraction and coding of meaningful concepts from the transcribed dialogue. Concepts were coded according to established rules using ICF categories and were summarized semi-quantitatively. Results: In the analysis, 1582 different concepts were identified. For coding one concept, an average of 1.4 ICF categories was used. This resulted in 2235 concept-ICF category links, 1068 in the early postacute and 1167 in the long-term context, respectively. For the coding, 274 out of the 1454 categories contained in the ICF were used. Conclusion: The ICF coding showed the broad range of relevant aspects in the functioning experience of persons with SCI. Besides body limitations (especially paralysis and pain), the most relevant concepts covered mainly barriers in physical environment, assistive devices and social support, as well as the impact on everyday life regarding leisure and work. The resulting list of ICF categories can be helpful in facilitating person-centered clinical care and research.

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Section: Introductionmentioning

confidence: 99%

The individual experience of functioning and disability in Switzerland—patient perspective and person-centeredness in spinal cord injury

et al. 2011

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“…All outcome measures included in this analysis link to the activity and participation component in the ICF (25). The items contained in these measures capture well the concepts identified by patients as relevant within this ICF component (50). Therefore, in contrast to the argument put forward by Maheu and Berenbaum (51), we believe that there is no a priori need for new outcome measures to assess aspects of functioning within this ICF component.…”

Section: Discussionmentioning

confidence: 77%

“…New outcome measures would need to be developed for aspects of functioning that are important from the patient's perspective, but are not well addressed by current outcome measures. Such aspects may include different qualities of pain, aesthetic changes, and psychological consequences (50).…”

Section: Discussionmentioning

confidence: 99%

Toward a Standardized Reporting of Outcomes in Hand Osteoarthritis: Developing a Common Metric of Outcome Measures Commonly Used to Assess Functioning

Prodinger

Stamm

Peterson

et al. 2016

Arthritis Care & Research

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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 (x 2 > 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.

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“…Another qualitative study [20] has used the ICF in order to explore personal and social effects of women with Rheumatoid Arthritis that live under poverty, and from its results the ICF has been proven a useful framework in order to understand and describe these complex experiences. Additionally, another study [21] conducted a cross-country qualitative study with focus groups of patients with hand osteoarthritis (51 of the 56 patients included in the study were women). They used an ICF-based mapping process in the initial steps of the data analysis in order to combine qualitative data from different countries using a common language before proceeding to the final step of their analysis [2].…”

Section: Implementation Of the Icf In Research On Women With Disabilimentioning

confidence: 99%

“…This report highlights national available data, source, year of collection and prevalence Furthermore, the proportion of WwD aged 16-64 is 15.6%: 3.1% of women between [16][17][18][19][20][21][22][23][24]8.4% between 25-54, and 18.8% between 55-64. These percentages are slightly lower than those of men with disabilities, who represent 16.2% of the total population: 3.6% in the age group [16][17][18][19][20][21][22][23][24]8.3% in group 25-54, and 22% in 55-64 range. The report stresses also the lack of a common data source and a time frame at European level for the collection of data on disability, underlined by the lack of a common definition of disability across Europe.…”

Section: Women With Disability: Prevalence From European and Internatmentioning

confidence: 99%

Women with Disability across Europe: Issues on Updated and Available Data

Leonard¹

2014

J Women's Health Care

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The collection of comparable estimates of Women with Disability (WwD) is essential for successful policy-making, and can be directly addressed to the reduction of the barriers that WwD have to face so to achieve full participation in all aspects of their lives. In order to minimize and prevent barriers for WwD, a common policy and a research framework is needed within the European countries. Therefore, the aim of this paper is to underline the issues related to availability, type, and comparability of European data about WwD, and to suggest how to overcome some of the open needs. In particular, the International Classification of Functioning, Disability and Health (ICF) issued by the World Health Organization could be the core conceptual model for collecting data and measuring disability, acting as the basis for relevant social policies, since information at all levels on the functioning of WwD is essential for policy purposes.

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Patient perspective of hand osteoarthritis in relation to concepts covered by instruments measuring functioning: a qualitative European multicentre study

Abstract: 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.

Cited by 76 publications

References 35 publications

The individual experience of functioning and disability in Switzerland—patient perspective and person-centeredness in spinal cord injury

The individual experience of functioning and disability in Switzerland—patient perspective and person-centeredness in spinal cord injury

Toward a Standardized Reporting of Outcomes in Hand Osteoarthritis: Developing a Common Metric of Outcome Measures Commonly Used to Assess Functioning

Women with Disability across Europe: Issues on Updated and Available Data

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