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Objectives: A historical review of the editorial board and the founding editor of WORK: A Journal of Prevention, Assessment and Rehabilitation was conducted to examine the understanding of the editorship and contributions of this team to the knowledge in WORK.
Participants: The team of four authors worked together to identify an approach to evaluate the contributions and impact of WORK's editorial board (EB) on the journal's scholarship. The editor-in-chief (EIC) and editorial board members were participants in this evaluation.
Methods: Informative and formative evaluations were used to investigate how knowledge was shaped through the development of an epistemic community of scholars in the field of work. Metrics of the EB composition and participation in the journal as well as surveys and interviews with the board and the editor-in-chief were analyzed.
Results: The EB represents an international community of scholars with a common interest in work and who contribute academically both within WORK and beyond. The epistemic community that has evolved through the editorial board represents a pluralistic perspective on work that is needed to inform practice, and knowledge.
Conclusion: Future directions to continue to advance knowledge through WORK's editorial board and EIC are elaborated.
Introduction: The aim of this review was to gain an understanding of the first 20 years of contributions to WORK within the assessment domain and to reflect on the perspectives underscoring this knowledge base.
Method: A narrative review of assessment articles using the WORK ARTicle database was conducted. Assessment articles were searched using issues from 1990 to 2009. Descriptive data was analyzed to examine historical trends of the specific types and dimensions of articles, the regional location of the contributions, and the methodological accordance. A reflective process was used by an editorial board member of WORK to inductively interpret perspectives and contextual issues that underpinned the evolution of the assessment domain in WORK.
Results: Over half of N= 108 of the articles on assessment in WORK focused on establishing or reporting reliability and validity of assessments used in clinical practice or evaluation research. The majority of the assessment articles were predominantly focused on the person. Contributions of articles were from 5 regions: North America, Europe, Australia, Asia and Africa.
Conclusions: Assessment articles in WORK have contributed to the development of evidence to support assessment of the worker. These articles represent a knowledge base that emphasizes evidence-based assessments to evaluate what a person can and cannot do to participate in work. Efforts are needed to expand knowledge generation in assessment to include more evaluations on the workplace and occupation dimensions, and that also considers the worker in context.
Objective: Many studies published in the journal WORK in the recent decades have discussed work and employment trends. However, the dimensions of these contributions over time have not been reviewed. The main objective of this study was to investigate the knowledge development in regard to work-related rehabilitation in WORK over the last two decades.
Methods: A scoping review was conducted using the following five stages: (i) identifying research question, (ii) identifying relevant studies, (iii) study selection, (iv) charting, summarizing, and collating the data, and (v) reporting the results. Studies were selected from the WORK Article Database.
Results: Seventy-five relevant studies were identified. The findings reflect that WORK has published papers from across the world, with most of the studies from the United States, Sweden, Canada, and Hong Kong. The complexity and multi-factorial nature of work-related rehabilitation was reflected in the application of quantitative, qualitative, and mixed method research approaches, as well as case studies. Study participants were characterized by work, and non-work related injuries, systematic diseases/chronic illness, fulfilled certain socio-demographic characteristic, and represented various stakeholders. Fewer studies drew on secondary resources. In the findings one re-occurring theme has been noted: 'maintaining/obtaining/returning to secure and stable employment/work'.
Conclusions: Four key-reflections evolved from this scoping review that provide potential avenues for future research. These key-reflections include (i) the national, transnational and international dimension of the reviewed studies, (ii) the various societal levels informing work-related rehabilitation practices, (iii) the diversity of methodologies applied in current research, and (iv) the variability of terminology used within the reviewed studies. The journal WORK has published a variety of research over the last two decades and contributed significantly to our current understanding of work-related rehabilitation. However, further research in these reflective areas would expand the current knowledge base.
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.
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.
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.
Background
Contemporary casemix systems for health services need to ensure that payment rates adequately account for actual resource consumption based on patients’ needs for services. It has been argued that functioning information, as one important determinant of health service provision and resource use, should be taken into account when developing casemix systems. However, there has to date been little systematic collation of the evidence on the extent to which the addition of functioning information into existing casemix systems adds value to those systems with regard to the predictive power and resource variation explained by the groupings of these systems. Thus, the objective of this research was to examine the value of adding functioning information into casemix systems with respect to the prediction of resource use as measured by costs and length of stay.
Methods
A systematic literature review was performed. Peer-reviewed studies, published before May 2014 were retrieved from CINAHL, EconLit, Embase, JSTOR, PubMed and Sociological Abstracts using keywords related to functioning (‘Functioning’, ‘Functional status’, ‘Function*, ‘ICF’, ‘International Classification of Functioning, Disability and Health’, ‘Activities of Daily Living’ or ‘ADL’) and casemix systems (‘Casemix’, ‘case mix’, ‘Diagnosis Related Groups’, ‘Function Related Groups’, ‘Resource Utilization Groups’ or ‘AN-SNAP’). In addition, a hand search of reference lists of included articles was conducted. Information about study aims, design, country, setting, methods, outcome variables, study results, and information regarding the authors’ discussion of results, study limitations and implications was extracted.
Results
Ten included studies provided evidence demonstrating that adding functioning information into casemix systems improves predictive ability and fosters homogeneity in casemix groups with regard to costs and length of stay. Collection and integration of functioning information varied across studies. Results suggest that, in particular, DRG casemix systems can be improved in predicting resource use and capturing outcomes for frail elderly or severely functioning-impaired patients.
Conclusion
Further exploration of the value of adding functioning information into casemix systems is one promising approach to improve casemix systems ability to adequately capture the differences in patient’s needs for services and to better predict resource use.
Objective: Cohort studies are an appropriate method for the collection of population-based longitudinal data to track people's health and functioning over time. However, describing and understanding functioning in its complexity with all its determinants is one of the biggest challenges faced by clinicians and researchers.
Design: This paper focuses on the development of a cohort study on functioning, outlining the relevant steps and related methods, and illustrating these with reference to the Swiss Spinal Cord Injury Cohort Study (SwiSCI).
Methods and results: In setting up a cohort study the initial step is to specify which variables are to be included, i.e. what to assess. The International Classification of Functioning, Disability and Health (ICF) is valuable in this process. The second step is to identify how to assess the specified ICF categories. Existing instruments and assessments can then be linked to the ICF.
Conclusion: The methods outlined here enable the development of a cohort study to be based on a comprehensive perspective of health, operationalized through functioning as conceptualized and classified in the ICF, yet to remain efficient and feasible to administer.
Objective: To test subgroups of a community-based sample of individuals with spinal cord injury, categorized by the application of current recommendations by the International Spinal Cord Society.
Design: Community survey.
Participants: Individuals with traumatic and non-traumatic spinal cord injury residing in Switzerland.
Methods: Recommended subgroups of age, gender, years since injury, severity of injury and aetiology were tested against the following criteria: (i) distribution of participants across categories; (ii) within- and between-group variability with regard to selected outcomes of functioning and quality of life.
Results: Data-sets for 1,549 participants (28.5% women; mean age 52 ± 15 years) were available for analyses. There was a number of participants in every subgroup, yet numbers were relatively small in the group with the shortest time since injury (< 1 year; n = 23) and in the oldest age group (≥76; n = 94). A high variability in some outcomes was detected between categories. All variables were predictive for most of the endpoints investigated.
Conclusion: Recommended categorization could well fit the present sample. A minor concern was the low numbers of participants in some subgroups.
Metric properties of the Spinal Cord Independence Measure - Self Report in a community survey
(2016)
Objective: The Spinal Cord Independence Measure – Self Report (SCIM-SR) is a self-report instrument for assessing functional independence of persons with spinal cord injury. This study examined the internal construct validity and reliability of the SCIM-SR, when administered in a community survey, using the Rasch measurement model.
Methods: Rasch analysis of data from 1,549 individuals with spinal cord injury who completed the SCIM-SR.
Results: In the initial analysis no fit to the Rasch model was achieved. Items were grouped into testlets to accommodate the substantial local dependency. Due to the differential item functioning for lesion level and degree, spinal cord injury-specific sub-group analyses were conducted. Fit to the Rasch model was then achieved for individuals with tetraplegia and complete paraplegia, but not for those with incomplete paraplegia. Comparability of ability estimates across sub-groups was attained by anchoring all sub-groups on a testlet.
Conclusion: The SCIM-SR violates certain assumptions of the Rasch measurement model, as shown by the local dependency and differential item functioning. However, an intermediate solution to achieve fit in 3 out of 4 spinal cord injury sub-groups was found. For the time being, therefore, it advisable to use this approach to compute Rasch-transformed SCIM-SR scores.
Objective: Functioning is an important outcome to measure in cohort studies. Clear and operational outcomes are needed to judge the quality of a cohort study. This paper outlines guiding principles for reporting functioning in cohort studies and addresses some outstanding issues.
Design: Principles of how to standardize reporting of data from a cohort study on functioning, by deriving scores that are most useful for further statistical analysis and reporting, are outlined. The Swiss Spinal Cord Injury Cohort Study Community Survey serves as a case in point to provide a practical application of these principles.
Methods and Results: Development of reporting scores must be conceptually coherent and metrically sound. The International Classification of Functioning, Disability and Health (ICF) can serve as the frame of reference for this, with its categories serving as reference units for reporting. To derive a score for further statistical analysis and reporting, items measuring a single latent trait must be invariant across groups. The Rasch measurement model is well suited to test these assumptions.
Conclusion: Our approach is a valuable guide for researchers and clinicians, as it fosters comparability of data, strengthens the comprehensiveness of scope, and provides invariant, interval-scaled data for further statistical analyses of functioning.
The occupational therapy community has been receptive to the World Health Organisation's International Classification of Functioning, Disability and Health (ICF) published in 2001. Building upon results of a survey (2008–2009) and subsequent workshop (2010) conducted by the World Federation of Occupational Therapists on the use and utility of the ICF for occupational therapists, this paper addresses some of the opportunities and challenges to strengthening the use of the ICF in occupational therapy practice. Attaining further clarity on the relationship of occupational therapy concepts and the ICF and developing crosswalk tables to exemplify linkages between occupational therapy terminology and the ICF will strengthen utility of the ICF for occupational therapy. Enhanced clarity about the concepts within occupational therapy that correspond to the ICF will ultimately assist other professions and disciplines in their understanding about occupational therapy and occupational therapists’ roles in health and related systems.
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.
Institutional ethnographers and occupational scientists share a common interest in studying what people do in their daily lives. Institutional ethnographers start inquiry at the standpoint of people as they are situated in the actualities of everyday life and then turn their gaze from the individual to the social. We aim to outline in this paper some key tenets of institutional ethnography to argue its relevance for studying human occupation. More specifically, we posit that institutional ethnography provides a promising social theory and method to further understandings of the situated nature of human occupation.
Objective:
Patient reported outcomes (PROs) are relevant in rheumatology. Variable accessibility and validity of commonly used PROs are obstacles to homogeneity in evidence synthesis. The objective of this project was to provide a comprehensive library of “validated PROs”.
Methods:
A launch meeting with rheumatologists, PROs methodological experts, and patients, was held to define the library’s aims and scope, and basic requirements. To feed the library we performed systematic reviews on selected diseases and domains. Relevant information on PROs was collected using standardised data collection forms based on the COSMIN checklist.
Results:
The EULAR Outcomes Measures Library (OML), whose aims are to provide and to advise on PROs on a user-friendly manner albeit based on scientific grounds, has been launched and made accessible to all. PROs currently included cover any domain and, are generic or specifically target to the following diseases: rheumatoid arthritis, osteoarthritis, spondyloarthritis, low back pain, systemic lupus erythematosus, gout, osteoporosis, juvenile idiopathic arthritis, and fibromyalgia. Up to 236 instruments (106 generic and 130 specific) have been identified, evaluated, and included. The systematic review for SLE, which yielded 10 specific instruments, is presented here as an example.
The OML website includes, for each PRO, information on the construct being measured and the extent of validation, recommendations for use, and available versions; it also contains a glossary on common validation terms.
Conclusion:
The OML is an in progress library led by rheumatologists, related professionals and patients, that will help to better understand and apply PROs in rheumatic and musculoskeletal diseases.
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.
The paper demonstrates how institutional ethnography provides a way forward for occupational scientists to understand how social policies shape and infiltrate people's daily lives and work. Institutional ethnography is a method of inquiry that starts in individual's experiences and from there traces how their experiences are coordinated to and become shaped within particular organizational processes and social relations. In this paper, we are specifically interested in how social policies, as higher order texts, shape the organizational processes and service agents' work at Labor Market Offices, and enter into the organization of people's everyday activities. We want to make visible how particular policies enter into the organization of the daily lives of women with rheumatoid arthritis who apply for unemployment benefits and ‘regulate’ what they can or may have to do, even though higher order policy texts are not immediately visible or actively referred to in the setting. We learn from the experiences of two women, who are of employable age, have been diagnosed with rheumatoid arthritis, and live in a mid-sized city in Austria.
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.
Occupational science has been discussed in terms of its relation to occupational therapy, its philosophical and theoretical foundations, and its international and interdisciplinary character over the past years. The disciplinary identity of occupational science in non-English speaking countries has not yet been debated in the literature. The aim of this article is to discuss occupational science as an emergent discipline in Austria, a German-speaking country. The discussion is divided into two parts. In the first part we engage in critical reflexivity to explicate the current development of occupational science in Austria by reviewing the disciplinary and historical context of occupational science and the related profession of occupational therapy, the educational and institutional influences as well as the influence of language. In the second part, we illustrate that occupational science is an emerging discipline in Austria by drawing on an ongoing research project: the Gender, Occupational Balance, and Immunology Study. By making explicit how occupational science has emerged, from our insider perspective, we aim to contribute to the further development of the disciplinary identity of occupational science nationally and internationally.
Introduction:
Occupational therapists' intention of enabling women with rheumatoid arthritis to participate in everyday life is fraught with challenges in everyday practice.
Method:
Inspired by institutional ethnography, this paper aims to make explicit how the work of occupational therapists in an outpatient rheumatology hospital setting is governed within invisible, ruling relations. An analytical description of the first author's clinical experience was a standpoint from which to explicate how occupational therapy is coordinated to the ruling relations of the Austrian health care system.
Findings:
Occupational therapy practice and research are ruled within a positivist, body-focused, medical apparatus, which renders largely invisible occupational therapists' knowledge of enabling people to engage in occupations that are meaningful to them.
Conclusion:
Occupational therapists have professional power that can be asserted by strategically using occupational therapy specific knowledge and language in textually mediated practices, from assessments and case files to media images, to give greater visibility and influence to the profession's work of enabling occupation.
Objectives: The purpose of this article is to share the details, outcomes and deliverables from an international workshop on work transitions in London, Ontario, Canada. Participants: Researchers, graduate students, and community group members met to identity ways to advance the knowledge base of strategies to enhance work participation for those in the most disadvantaged groups within society.
Methods: A participatory approach was used in this workshop with presentations by researchers and graduate students. This approach included dialogue and discussion with community members. In addition, small group dialogue and debate, world cafe discussions, written summaries of group discussion and reflection boards were used to bring new ideas to the discussion and to build upon what we know.
Findings: Two research imperatives and six research recommendations were identified to advance global dialogue on work transitions and to advance the knowledge base. Occupational justice can be used to support future research directions in the study of work transitions.
Conclusions: Moving forward requires a commitment of community of researchers, clinicians and stakeholders to address work disparities and implement solutions to promote participation in work.
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.
The aim of this secondary analysis is to explicate taken-for-granted practices in the health care system in which the life stories of six women with rheumatoid arthritis (RA) are embedded. A secondary analysis of life stories of six women with RA, which were assigned to a typology named "rheumatoid arthritis as a source for new challenges" (STAMM et al., 2008) in the primary narrative study, was conducted. The theoretical framework applied for the analysis was informed by feminist standpoint theory and feminist philosophy. In the present analysis, each of the women challenged established health care practices and the cognitive authority of medicine at a certain point in their life story reflections. Becoming more conscious about health care practices enabled the women to acknowledge their own knowledge and to make choices about their health. The findings challenge health care providers to engage in critical reflexivity to become conscious about and to transform taken-for-granted practices as embedded in larger systems and to create health care environments that enable dialogue between clients and health care providers.
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.
Purpose: This study aimed to gain knowledge about environmental factors (EFs) that impact work and social life participation of people with multiple sclerosis (MS) in Austria and Switzerland to extend the knowledge of participation and to identify key areas for measuring participation.
Method: A three-round Delphi study was conducted defining patients as experts. In the 1st round, qualitative data was gathered through questionnaires, analyzed with content analysis, and factors were assigned to EFs as classified in the ICF. In the 2nd and 3rd round, experts judged EFs according to its relevance to obtain consensus (cut-off 75%). Categories were ranked on a scale from mostly important to important.
Results: One hundred and twelve Austrian and 109 Swiss experts were recruited. The content analysis revealed 768 EFs. The study resulted in a list of 176 consensus factors for Austria and 177 Switzerland. Five categories revealed to be highly important, 12 moderately important, 6 fairly important, and 10 important.
Conclusions: This study indicates that participation in work or social life is influenced by physical, social, attitudinal, and policy factors. Consensus factors afford insights into areas for consideration in the development of participation outcome measurements and support a comprehensive and inclusive rehabilitation approach.
Functioning information constitutes a relevant component for determining patients’ service needs and respective resource use. Diagnosis-Related Group (DRG) systems can be optimized by integrating functioning information.
First steps toward accounting for functioning information in the German DRG (G-DRG) system have been made; yet, there is no systematic integration of functioning information. The G-DRG system is part of the health system; it is embedded in and as such dependent on various stakeholders and vested interests.
This study explores the stakeholder’s perspective on integrating functioning information in the G-DRG system. A qualitative interview study was conducted with national stakeholders in 4 groups of the G-DRG system (health policy, administration, development, and consultations).
Interviews were analyzed using inductive thematic analysis. In total, 14 interviews were conducted (4 administration and 10 consultation group). Three main themes were identified: (1) functioning information in the G-DRG system: opportunities and obstacles, (2) general aspects concerning optimizing G-DRG systems by integrating additional information, and (3) ideas and requirements on how to proceed.
The study offers insights into the opportunities and obstacles of integrating functioning information in the G-DRG system. The relevance of functioning information was evident. However, the value of functioning information for the G-DRG system was seen critically. Integrating functioning information alone does not seem to be sufficient and a systems approach is needed.
This scoping review aimed to generate an overview of existing quality management (QM) models for inpatient healthcare published in peer-reviewed literature.
Data sources
Peer-reviewed publications published until June 2016 were retrieved from the databases Medline, PubMed, CINAHL and Cochrane Library using search terms related to QM and models.
Study selection
Publications mentioning a QM model for general application in healthcare or inpatient care in their title or abstract were included. Languages considered were: English, French, German, Italian and Spanish.
Data extraction was 3-fold. First, publication characteristics were summarized. Second, the frequency of each identified model was documented and the publications were divided into conceptual and implementation publications. Third, relevant QM models were identified and information regarding the model, including content and relationship with other models, was extracted.
Of 925 retrieved publications, 213 were included. The included publications reported on 64 different QM models that were suitable for or used in inpatient care. Seventeen models were identified as being relevant. The 17 models were then categorized into three different levels: conceptual quality improvement models, concrete application models and country specific adaptations.
This scoping review provides an overview of 17 existing QM models for inpatient care and their relationships with each other. Various types of models with differing aspects and components exist. In searching for QM models, many different concepts like QM system, accreditation or methodologies appeared. For future investigation, concepts of interest should be clarified.
Objective Specifying the content in electronic health records (EHRs) through standardized headings based on international reference classifications will facilitate their semantic interoperability. The objective of this study was to specify potential chapter headings for EHRs aligned with the World Health Organization's (WHO) International Classification of Functioning, Disability, and Health (ICF) based on the perspectives of people living with chronic health conditions, carers, and professionals.
Methods A multistage process was established including (1) a patient workshop, (2) an online survey of both patients and carers, and (3) an online consultation with patient and professional bodies. The ICF served as a starting point. Based on the first stage, a first draft of the headings was developed and further refined based on the feedback at each stage. We examined in a fourth step whether items from existing assessment tools support the operationalization of the identified headings. Therefore, we used the WHO Disability Assessment Schedule 2.0 (WHODAS2.0), a patient-reported instrument, and interRAI, a clinician-administered instrument.
Results The first workshop was attended by eight people, the survey was completed by 250 persons, and the online consultation received detailed feedback by 18 professional bodies. This study resulted in 16 potential chapter headings for EHRs which capture aspects related to the body, such as emotions, motivation, sleep, and memory or thoughts, to being involved in social life, such as mobility, social activities, and finances, as well as to the care process, such as understanding of health issues and treatment or care priorities and goals. When using the WHODAS2.0 and interRAI together, they capture all except one of the proposed headings.
Conclusion The identified headings provide a high level structure for the standardized recording, use, and sharing of information. Once implemented, these headings have the potential to facilitate the delivery of personalized care planning for patients with long-term health problems.
The International Classification of Functioning, Disability and Health (ICF) Generic- 30 Set (previously referred to as Rehabilitation Set) is a minimal set of ICF categories for reporting and assessing functioning and disability in clinical populations with different health conditions along the continuum of care. Recently, the Italian Society of Physical and Rehabilitation Medicine (SIMFER) developed an Italian modification of the simple and intuitive descriptions (SID) of these categories. This study was the first one to implement the use of the SID in practice.1)
To implement the use of the ICF in clinical practice and research among Italian Residents in PRM. 2) To verify if the SID made the application of ICF Generic 30 Set more user-friendly than the original descriptions. 3) To examine the prevalence of functioning problems of patients accessing Rehabilitation Services to serve as reference for the development of an ICF-based clinical data collection tool.Multicenter cross-sectional study.
Italian Physical Medicine and Rehabilitation (PRM) outpatient rehabilitation services. Patients referring to Italian PRM outpatient rehabilitation services and Italian Residents in PRM.Each School of Specialization involved, randomly, received the ICF Generic-30 Set with the original descriptions or with the SID.
Residents collected over a 4-month period (April-July 2016) patients data related to the ICF Generic-30 Set categories. Moreover, the residents self- assessed their difficulty in using the ICF Generic-30 Set with the original descriptions or with the SID, through a Numeric Rating Scale (NRS).Ninety-three residents collected functioning data of 864 patients (mean aged 57.7±19.3) with ICF Generic-30 Set: 304 with the original descriptions and 560 with SID. The difficulty in using the ICF Generic-30 Set with SID was rated as lower than using the original descriptions (NRS = 2.8±2.5 vs 3.5±3.1; p<0.001).
The most common disease was the back pain (9.6%) and the most common altered ICF categories were b280 (76.3%) and b710 (72.9%).This multicenter cross-sectional study shown that the ICF Generic-30 Set is a valuable instrument for reporting and assessing functioning and disability in clinical populations with different health conditions and along the continuum of care and that SID facilitate the understanding of the ICF categories and therefore their use in clinical practice.
This National survey, improving the knowledge of ICF among Italian PRM residents, represents an important step towards the system-wide implementation of ICF in the healthcare system.
Objective: To examine the use of the term ‘metric’ in health and social sciences’ literature, focusing on the interval scale implication of the term in Modern Test Theory (MTT).
Materials and methods: A systematic search and review on MTT studies including ‘metric’ or ‘interval scale’ was performed in the health and social sciences literature. The search was restricted to 2001–2005 and 2011–2015. A Text Mining algorithm was employed to operationalize the eligibility criteria and to explore the uses of ‘metric’. The paradigm of each included article (Rasch Measurement Theory (RMT), Item Response Theory (IRT) or both), as well as its type (Theoretical, Methodological, Teaching, Application, Miscellaneous) were determined. An inductive thematic analysis on the first three types was performed.
Results: 70.6% of the 1337 included articles were allocated to RMT, and 68.4% were application papers. Among the number of uses of ‘metric’, it was predominantly a synonym of ‘scale’; as adjective, it referred to measurement or quantification. Three incompatible themes ‘only RMT/all MTT/no MTT models can provide interval measures’ were identified, but ‘interval scale’ was considerably more mentioned in RMT than in IRT.
Conclusion: ‘Metric’ is used in many different ways, and there is no consensus on which MTT metric has interval scale properties. Nevertheless, when using the term ‘metric’, the authors should specify the level of the metric being used (ordinal, ordered, interval, ratio), and justify why according to them the metric is at that level.
Background: Patient reported outcome measures (PROMs) have been integrated in national quality registries or specific national monitoring initiatives to inform the improvement of quality of care on a national scale. However there are many unanswered questions, such as: how these systems are set up, whether they lead to improved quality of care, which stakeholders use the information once it is available. The aim of this study was to examine supporting and hindering factors relevant to integrating patient-reported outcome measures (PROMs) in selected health information systems (HIS) tailored toward improving quality of care across the entire health system.
Methods: First, a systematic search and review was conducted to outline previously identified factors relevant to the integration of PROMs in the selected HIS. A social network analysis was performed to identify networks of experts in these systems. Second, expert interviews were conducted to discuss and elaborate on the identified factors. Directive content analysis was applied using a HIS Evaluation Framework as the frame of reference. This framework is structured into four components: Organization, Human, Technology, and Net benefits.
Results: The literature review revealed 37 papers for the NHS PROMs Programme and 26 papers for the SHPR and SKAR: Five networks of researchers were identified for the NHS PROMs Programme and 1 for the SHPR and SKAR. Seven experts related to the NHS PROMs Programme and 3 experts related to the SKAR and SHPR participated in the study. The main themes which revealed in relation to Organization were Governance and Capacity building; to Human: Reporting and Stakeholder Engagement; to Technology: the Selection and Collection of PROMs and Data linkage. In relation to Net benefits, system-specific considerations are presented.
Conclusion: Both examples succeeded in integrating PROMs into HIS on a national scale. The lack of an established standard on what change PROMs should be achieved by an intervention limits their usefulness for monitoring quality of care. Whether the PROMs data collected within these systems can be used in routine clinical practice is considered a challenge in both countries.
Objective: To describe functioning in people living with spinal cord injuries (SCI) in Switzerland.
Design: Secondary analysis of cross-sectional survey data. Setting Community, Switzerland.
Participants: Individuals (N=1549) 16 years of age or older with a history of traumatic or nontraumatic SCI and permanently residing in Switzerland.
Interventions: Not applicable.
Main Outcome Measures: Functioning was operationalized through 4 domains: (1) impairments in body functions; (2) impairments in mental functions; (3) independence in performing activities; and (4) performance problems in participation.
Results: Univariate analysis indicated a high prevalence of problems in 5 areas: (1) housework; (2) climbing stairs; (3) tiredness; (4) spasticity; and (5) chronic pain. Graphical modeling showed a strong association among the four domains of functioning. Moreover, we found that the differences in the dependence structures were significant between the paraplegia SCI population and the tetraplegia SCI population.
Conclusions: This study is a first study in the epidemiology of functioning of people living with SCI in Switzerland. Using univariate and graphical modeling approaches, we proposed an empirical foundation for developing hypotheses on functioning in each domain and category that could inform health systems on people’s health needs.
The Impact of Missing Values and Single Imputation upon Rasch Analysis Outcomes: A Simulation Study
(2018)
Imputation becomes common practice through availability of easy-to-use algorithms and software. This study aims to determine if different imputation strategies are robust to the extent and type of missingness, local item dependencies (LID), differential item functioning (DIF), and misfit when doing a Rasch analysis. Four samples were simulated and represented a sample with good metric properties, a sample with LID, a sample with DIF, and a sample with LID and DIF. Missing values were generated with increasing proportion and were either missing at random or completely at random. Four imputation techniques were applied before Rasch analysis and deviation of the results and the quality of fit compared. Imputation strategies showed good performance with less than 15% of missingness. The analysis with missing values performed best in recovering statistical estimates. The best strategy, when doing a Rasch analysis, is the analysis with missing values. If for some reason imputation is necessary, we recommend using the expectation-maximization algorithm.
Study design
Case study.
Objective
To present a framework for developing an International Classification of Functioning, Disability and Health (ICF)-based documentation system in spinal cord injury (SCI)-specific rehabilitation.
Setting
Data collection took place at Maharaj Hospital, Thailand. The preparatory studies and analysis were performed at Swiss Paraplegic Research, Switzerland.
Methods
Data collected from interviews and health records of four SCI cases across the continuum of care (acute, post-acute, early and late long term) were linked to ICF categories using established ICF linking rules. The resulting categories were compared with selected ICF sets (ICF Generic-30, ICF core sets for SCI and multiple sclerosis) to determine the extent of coverage. Furthermore, the context of applicable services was described systematically.
Results
Less than half of the ICF categories in the defined ICF sets were covered by clinical assessment tools. Low correspondence was found predominantly in acute and late long-term phase. Least well covered were categories of activities and participations and environmental factors. The correspondence of categories increased when considering the additional ICF categories identified from patient interviews. The description of rehabilitation services provided in each case classified according to the dimensions of service provider, funding, and service delivery.
Conclusions
There is a need to promote the systematic and standardized assessment of functioning among health professionals working in the field of SCI in developing countries. This study describes basic steps toward developing a standardized ICF-based system for assessing and reporting functioning outcomes in SCI rehabilitation and across the continuum of care.
Study design
Cross-sectional.
Objectives
To examine the associations between activities, body structures and functions, and their relationship with aetiology, age and sex in persons with spinal cord injury (SCI) at discharge from first rehabilitation.
Setting
Swiss SCI Cohort Study (SwiSCI).
Methods
The study included 390 participants with newly acquired SCI and the International Classification of Functioning, Disability and Health (ICF) as conceptual frame of reference. Body structures were represented by injury level and severity; body functions by cardiovascular, pulmonary, skin, bowel and urinary functions and pain; mental functions by anxiety, depression, optimism and self-esteem; and activities by independence in performing activities of daily living (ADL). Using structural equation modelling (SEM), indirect effects of body structures and functions on independence in performing ADL through mental functions were tested for each mental function separately. For each structural model, fit was assessed using several indices and differences in aetiology, age and sex groups were explored.
Results
The structural model about optimism showed good fit in all indices; the models about anxiety, depression and self-esteem showed conflicting fit indices, respectively. Within all models, effects on independence in performing ADL were mainly direct. Pain showed significant (P < 0.05) indirect effects on independence in performing ADL within the depression, optimism and self-esteem models. The model about anxiety showed differences in aetiology groups.
Conclusions
Using an ICF-based modelling approach, this study presents an attempt towards a more comprehensive understanding of functioning in first rehabilitation of persons with SCI, which might be fundamental for rehabilitation planning.
Objective
To demonstrate the influence and added value of a Standardized Assessment and Reporting System (StARS) upon the reporting of functioning outcomes for national rehabilitation quality reports. A StARS builds upon an ICF-based (International Classification of Functioning, Disability and Health) and interval-scaled common metric.
Design
Comparison of current ordinal-scaled Swiss national rehabilitation outcome reports including an expert-consensus-based transformation scale with StARS-based reports through descriptive statistical methods and content exploration of further development areas of the reports with relevant ICF Core Sets.
Setting
Swiss national public rehabilitation outcome quality reports on the clinic level.
Participants
A total of 29 Swiss rehabilitation clinics provided their quality report datasets including 18 047 patients.
Interventions
Neurological or musculoskeletal rehabilitation.
Main outcome measures
Functional Independence Measure™ or Extended Barthel Index.
Results
Outcomes reported with a StARS tended to be smaller but more precise than in the current ordinal-scaled reports, indicating an overestimation of achieved outcomes in the latter. The comparison of the common metric’s content with ICF Core Sets suggests to include ‘energy and drive functions’ or ‘maintaining a basic body position’ to enhance the content of functioning as an indicator.
Conclusions
A StARS supports the comparison of outcomes assessed with different measures on the same interval-scaled ICF-based common metric. Careful consideration is needed whether an ordinal-scaled or interval-scaled reporting system is applied as the magnitude and precision of reported outcomes is influenced. The StARS’ ICF basis brings an added value by informing further development of functioning as a relevant indicator for national outcome quality reports in rehabilitation.
Impact of spasticity on functioning in spinal cord injury: an application of graphical modelling
(2020)
Abstract
Objective: To identify the impact of moderate-to-severe spasticity on functioning in people living with spinal cord injury.
Design: Secondary analysis of cross-sectional survey data using graphical modelling.
Subjects: Individuals (n = 1,436) with spinal cord injury aged over 16 years with reported spasticity problems.
Methods: Spasticity and 13 other impairments in body functions were assessed using the spinal cord injury Secondary Conditions Scale. Impairments in mental functions were assessed using the Mental Health subscale of the 36-item Short Form (SF-36). Independence in activities was measured with the Spinal Cord Injury Independence Measure Self-Report. Restrictions in participation were measured with the Utrecht Scale for Evaluation Rehabilitation – Participation.
Results: Fifty-one percent of participants reported moderate-to-severe spasticity. Graphical modelling showed that Chronic pain, Contractures, Tiredness, Doing housework, and Respiratory functions were associated with spasticity and were the top 5 potential targets for interventions to improve the experience of spasticity. The associations and intervention targets were dependent on the level and completeness of the lesion.
Conclusion: This is the first application of graphical modelling in studying spasticity in people living with spinal cord injury. The results can be used as a basis for studies aiming to optimize rehabilitation interventions in people with moderate-to-severe spasticity.
Lay Abstract
Spasticity is one of the most common complications of spinal cord injury. It influences limitations in functioning. Comprehensive evidence on the impact of spasticity on all domains of functioning may be beneficial to optimize rehabilitation interventions aimed at reducing the effects of spasticity. This is the first application of graphical modelling to study and visualize the impact of moderate-to-severe spasticity on functioning in people living with spinal cord injury. The results show that chronic pain, contractures, tiredness, doing housework, and respiratory functions were the functioning domains associated with spasticity. These are therefore the top 5 potential targets for interventions to improve the experience of spasticity. In addition, the level and completeness of lesions should be considered when studying spasticity in relation to all domains of functioning. These results should be used as a basis for studies aiming to optimize rehabilitation interventions in people with moderate-to-severe spasticity.
Background
The World Health Organization developed the International Classification of Functioning, Disability, and Health (ICF) in 2001 and has been in the process of implementing it in clinics since then. Current international efforts to implement ICF in rehabilitation clinics include the implementation of ICF Core Sets and the development of simple, intuitive descriptions for the ICF Generic-30 Set (also called Rehabilitation Set). The present study was designed to operationalize these ICF tools for clinical practice in Japan. This work included 1) the development of the Japanese version of the simple, intuitive descriptions for the ICF Generic-30 Set, 2) the development of a rating reference guide for Activity and Participation categories, and 3) the examination of the interrater reliability of rating Activity and Participation categories.
Methods
The Japanese version of the simple, intuitive descriptions for the ICF Generic-30 Set was developed following the process employed to develop the Chinese and Italian versions.
For further operationalization of this ICF Set in practice, a rating reference guide was developed. The development of the rating reference guide involved the following steps: 1) a trial of rating patients by several raters, 2) cognitive interviewing of the raters to analyse the thinking process involved in rating, 3) drafting of the rating reference guide, and 4) review by ICF specialists to confirm consistency with the original ICF concepts.
After the rating reference guide was developed, interrater reliability of the rating with the reference guide was determined. Interrater reliability was examined using weighted kappa statistics with linear weight.
Results
Through the pre-defined process, the Japanese version of the simple, intuitive descriptions for 30 categories of the ICF Generic-30 Set and the rating reference guides for 21 Activity and Participation categories were successfully developed. The weighted kappa statistics ranged from 0.61 to 0.85, showing substantial to excellent agreement of the ratings between raters.
Conclusions
The present study demonstrates that ICF categories can be translated into clinical practice. Collaboration between clinicians and researchers would further enhance the implementation of the ICF in Japan.
Making one's own choices is an important part of leading a fulfilling life within society. However, people with IDs often face significant obstacles when making their own decisions. Article 12 (Equal recognition before the law) of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) aims to ensure firstly that people with IDs and others with compromised capacity are nonetheless recognized as legal individuals, and secondly that assistance is provided in the form of supported decision‐making in order to exercise this resulting legal capacity. It is unclear whether current national legislation in any country satisfies these requirements in practice. This study utilizes institutional ethnography to reveal how decision‐making is coordinated in practice for people with mild to moderate IDs living in supported residential environments in England, and to determine whether these processes are compliant with Article 12 of the CRPD. Data collection was based on observations, semi‐structured interviews, and documentary analysis, involving 29 participants including people with mild to moderate IDs. The results point to the complexity of supported decision‐making and identify three main categories of decision‐making: spontaneous decisions, mid‐term decisions, and strategic decisions. The data also show that people with mild to moderate IDs are able to exercise their legal capacity through support decision‐making in their everyday life. Immediate and informal supported decision‐making exists in daily practice for people with mild to moderate IDs living in supported residential environments. Although there are structures in place for implementing supported decision‐making, various barriers persist that limit the overall efficacy and consistency of the realization of supported decision‐making, for example, multiple use of mental capacity assessments. Such practices move away from the supported decision‐making model toward substituted decision‐making.
Background
Modification of the home environment, together with rehabilitative interventions, is important for maximizing the level of functioning after an individual with disability undergoes rehabilitation in the hospital.
Objectives
We developed a simple screening scale – the home environment checklist (HEC) – to identify any mismatch between an individual's abilities and their home environment to help clinicians monitor the appropriateness of the home environment to which individuals with disability will be discharged. We also examined the psychometric properties of the HEC.
Methods
The HEC was developed by a multidisciplinary panel of rehabilitation experts using information routinely collected in rehabilitation clinics before discharge. The reliability of the checklist was assessed in 60 individuals undergoing rehabilitation. The inter-rater agreement and internal consistency of the scale were assessed by weighted kappa statistics and Cronbach's alpha, respectively. Rasch analysis was performed with 244 rehabilitation individuals to evaluate the internal construct validity, and the known-groups validity was confirmed by a comparison of the daily activity levels of 30 individuals with disabilities under rehabilitation to the HEC score.
Results
The HEC was developed as a simple, 10-item checklist. The weighted kappa statistics ranged from 0.73 to 0.93, indicating excellent inter-rater reliability. Cronbach's alpha was 0.92, indicating high internal consistency. Rasch analysis with a testlet approach on 3 subscales demonstrated a good fit with the Rasch model (χ2 = 13.2, P = 0.153), and the demonstrated unidimensionality and absence of differential item functioning supported the internal construct validity of the HEC. HEC scores were significantly different (P < .01) among individuals with disability and 3 levels of restrictions in their activities (no limitation, home-bound, and bed-bound), which demonstrates the known-groups validity of the HEC.
Conclusions
The HEC has good reliability and validity, which supports its utility in rehabilitation clinics.
Study design
Mapping of the National Spinal Cord Injury Model System (SCIMS) Database (NSCID) to the International Classification of Functioning, Disability and Health (ICF).
Objectives
To link the content of the latest two versions of the NSCID to the ICF; more specifically (1) to compare the content of the current NSCID 2016–2021 version to its predecessor (NSCID 2011–2016) using the ICF as a neutral reference framework, and (2) to compare the content contained in the NSCID 2016–2021 version with relevant ICF Sets.
Setting
The forms of the NSCID 2016–2021 and 2011–2016 versions were linked to the ICF and contrasted. Comparability of the current version of the NSCID with the ICF Core Set for Spinal Cord Injury (SCI) in the post-acute and long-term context and the two generic ICF sets— ICF Generic-7 and ICF Generic-30 was then examined.
Methods
ICF Linking Rules and descriptive statistics.
Results
The current NSCID 2016–2021 version covers functioning as classified in the ICF with 8 ICF categories more comprehensively than its predecessor does. More than 50% of ICF categories contained in the two ICF Generic Sets were covered. The coverage of the brief ICF Core Sets for SCI by the NSCID 2016–2021 was more than 50%, but the coverage of the comprehensive core sets was low. Results showed the best coverage in the ICF component Activities and Participation.
Conclusions
This study emphasizes how the ICF and its Sets can serve as a reference framework to foster comparability of existing data sets from both clinical practice and research.
Background: The Extended Barthel Index (EBI), consisting of the original Barthel Index plus 6 cognitive items, provides a tool to monitor patients’ outcomes in rehabilitation. Whether the EBI provides a unidimensional metric, thus can be reported as a valid sum-score, remains to be examined.
Objective: To examine whether the EBI can be reported as unidimensional interval-scaled metric for neurological and musculoskeletal rehabilitation.
Methods: Rasch analysis of a calibration sample of 800 cases from neurological or musculoskeletal rehabilitation in 2016 in Switzerland.
Results: In the baseline analysis no fit to the Rasch Model was achieved. When accommodating local dependencies with a testlet approach satisfactory fit to the Rasch Model was achieved, and an interval scale transformation table was created.
Conclusion: The results support the reporting of adapted EBI total scores for both rehabilitation groups by applying the interval scaled transformation table presented in this study.
Background
Limitations in upper limb functioning are common in Musculoskeletal disorders and the Disabilities of the Arm, Shoulder and Hand scale (DASH) has gained widespread use in this context. However, various concerns have been raised about its construct validity and so this study seeks to examine this and other psychometric aspects of both the DASH and QuickDASH from a modern test theory perspective.
Methods
Participants in the study were eligible if they had a confirmed diagnosis of Rheumatoid Arthritis (RA). They were mailed a questionnaire booklet which included the DASH. Construct validity was examined by fit to the Rasch measurement model. The degree of precision of both the DASH and QuickDASH were considered through their Standard Error of Measurement (SEM).
Results
Three hundred and thirty-seven subjects with confirmed RA took part, with a mean age of 62.0 years (SD12.1); 73.6% (n = 252) were female. The median standardized score on the DASH was 33 (IQR 17.5–55.0). Significant misfit of the DASH and QuickDASH was observed but, after accommodating local dependency among items in a two-testlet solution, satisfactory fit was obtained, supporting the unidimensionality of the total sets and the sufficiency of the raw (ordinal or standardized) scores.
Conclusion
Having accommodated local response dependency in the DASH and QuickDASH item sets, their total scores are shown to be valid, given they satisfy the Rasch model assumptions. The Rasch transformation should be used whenever all items are used to calculate a change score, or to apply parametric statistics within an RA population.
Significance and innovations
Most previous modern psychometric analyses of both the DASH and QuickDASH have failed to fully address the effect of a breach of the local independence assumption upon construct validity.
Accommodating this problem by creating ‘super items’ or testlets, removes this effect and shows that both versions of the scale are valid and unidimensional, as applied with a bi-factor equivalent solution to an RA population.
The Standard Error of Measurement of a scale can be biased by failing to take into account the local dependency in the data which inflates reliability and thus making the SEM appear better (i.e. smaller) than the true value without bias.
Abstract
Objective: Since the 1990s the Functional Independence Measure (FIM™) was believed to measure 2 different constructs, represented by its motor and cognitive subscales. The practice of reporting FIM™ total scores, together with recent developments in the understanding of the influence of locally dependent items on fit to the Rasch model, raises the question of whether the FIM™ 18-item version can be reported as a unidimensional interval-scaled metric.
Design: Rasch analysis of the FIM™ using testlet approaches to accommodate local response dependency.
Patients: A calibration sample containing 946 cases of data from 11,103 patients undergoing neurological or musculoskeletal rehabilitation in Switzerland in 2016.
Results: Baseline analysis and the traditional testlet approach showed no fit with the Rasch model. When items were grouped into 2 testlets, fit to the Rasch model was achieved, indicating unidimensionality across all 18 items. A transformation table to convert FIM™ raw ordinal scores to the corresponding Rasch interval scaled values was created.
Conclusion: This study provides evidence that FIM™ total scores represent a unidimensional set of items, supporting their use in clinical practice and outcome reporting when applying the respective transformation table. This provides a basis for standardized reporting of functioning.
Lay Abstract
The aim of this study was to look in detail at the FIM™, an assessment tool often used for patients undergoing rehabilitation. Some users report the FIM™ as 2 scores: one related to motor tasks, the other to cognitive tasks; others recommend reporting it as a single score including both motor and cognitive tasks. This study explored whether it is statistically meaningful to sum all the points into a single FIM™ total score. The results support the current practice of summing the points into a single total score for patients undergoing musculo-skeletal and neurological rehabilitation. The results also allowed an interval scale to be derived from the FIM™, enabling a broad range of calculations to be made using the FIM™ score, such as calculating the change in FIM™ outcomes from the time a patient is admitted to a rehabilitation clinic until their discharge.
Living with spinal cord injury in Mongolia: A qualitative study on perceived environmental barriers
(2020)
Context: Environmental factors play a key role in the lives of individuals with a spinal cord injury (SCI). This study identifies environmental barriers and their impacts on daily lives as perceived by individuals living with SCI in Mongolia.
Design: A qualitative study with semi-structured interviews was conducted. A topic guide for the interviews was structured around the components of the International Classification of Functioning, Disability, and Health.
Setting: Urban and rural areas of Mongolia.
Participants: A purposive sample of 16 persons with traumatic SCI.
Interventions: Not applicable.
Outcome Measures: Not applicable.
Results: Seven categories of environmental barriers were mentioned, such as poor access to the physical environment, absence of wheelchair-friendly transportation, negative societal attitudes, inadequate health and rehabilitation services, lack of access to assistive devices and medicines, limited financial resources for healthcare, and inaccurate categorization of disabilities in laws. These barriers were claimed to have an impact on physical and psychological health, limit activities, and restrict participation in almost all areas of life.
Conclusion: This study contributes to the identification of targets for interventions aimed at improving the lived experience of persons with SCI in a low-resource context. The findings reveal that while the Mongolian government already has laws and policies in place to improve access to the physical environment, transportation, assistive devices and employment, much more has to be done in terms of enforcement. Specialized SCI care and rehabilitation services are highly demanded in Mongolia.
Background: The International Classification of Functioning, Disability and Health is the international standard for describing and monitoring functioning. While the categories, the units of the classification, were not designed with measurement in mind, the hierarchical structure of the classification lends itself to the possibility of summating categories into some higher order domain. Focusing on the chapters of d4 Mobility, d5 Self-Care and d6 Domestic Life, this study seeks to ascertain if qualifiers rating of categories (0-No problem to 4-Complete problem) within those chapters can be summated, and whether such derived measurement is consistent with estimates obtained from well-known instruments which purport to measure the same constructs.
Methods: The current study applies secondary analysis to data previously collected in the context of validating Core Sets for stroke, rheumatoid arthritis, and osteoarthritis. Data included qualifier-based ratings of the categories in the Core Sets, and the physical functioning sub-scale of the Short-Form 36, and the World Health Organization Disability Assessment Schedule 2.0. To examine qualifier-comparator scale item agreement Kappa statistics were used. To identify whether appropriate gradients of the comparator scales were observed across qualifier levels, an Independent Sample Median Test of the ordinal scores was deployed. To investigate the internal validity of the summated ICF categories, the Rasch model was applied.
Results: Data from 2,927 subjects from Europe, Australasia, Middle East and South America were available for analysis; 36.3% had experienced a stroke, 35.8% osteoarthritis, and 27.9% had rheumatoid arthritis. The items from the Short-Form 36 could not match directly the qualifier categories as the former had only 3 response options. The Kappa between World Health Organization Disability Assessment Schedule 2.0 items and categories was low. For all qualifiers, a significant (<0.001) overall gradient was observed across the comparator scales. Only in few of the World Health Organization Disability Assessment Schedule 2.0 items could no discrete level be detected. The aggregation of the qualifiers at the Chapter and higher order levels mostly revealed fit to the Rasch model. Almost all ICF qualifiers showed ordered thresholds suggesting that the current structure and response options of the qualifiers worked as intended.
Conclusions: The findings of this study provide supporting evidence for the use of the professionally rated categories and associated qualifiers to measure functioning.
Implication for Rehabilitation
- This study provides evidence that functioning data can be collected directly with the International Classification of Functioning, Disability and Health (ICF) by using the ICF categories as items and the ICF qualifiers as rating scale.
- The findings of this study show the aggregated ratings of ICF categories from the chapters d4 Mobility, d5 Self-care, and d6 Domestic life capture a broader spectrum of the construct than the corresponding summated items from the SF36-Physical Function sub-scale and the corresponding items of the World Health Organization Disability Assessment Schedule 2.0.
- This study illustrates the potential of building quantitative measurement by aggregating ICF categories and their qualifier ratings into meaningful domains.
Objectives: To examine metric properties and responsiveness of the International Classification of Functioning, Disability and Health (ICF) Generic Set when used in routine clinical practice to assess functioning.
Design: Prospective multicentre study.
Setting: 50 hospitals from 20 provinces of Mainland China.
Participants: 4510 adult inpatients admitted to the departments of Pulmonology, Cardiology, Neurology, Orthopaedics, Cerebral Surgery or Rehabilitation Medicine.
Main outcome measures: The ICF Generic Set (ICF Generic 6 Set) applied with an 11-point numeric rating scale (0-no problem to 10-complete problem) was fit to the Partial Credit Model (PCM) to create an interval score of functioning.
Results: PCM assumptions were found to be fulfilled after accounting for Differential Item Functioning. With an average improvement by 7.86 points of the metric ICF Generic 6 score (95% CI 7.53 to 8.19), the ICF Generic 6 Set proved sensitive to change (Cohen’s f2=0.41). Ceiling and floor effects on detecting change in functioning were cancelled or reduced by using the metric score.
Conclusion: The ICF Generic 6 Set can be used for the assessment of functioning in routine clinical practice and an interval score can be derived which is sensitive to change.
Objective
To validate the International Classification of Functioning, Disability and Health (ICF) Generic-6 in daily routine clinical practice in Mainland China. Specific objectives were to analyze (1) interrater reliability, (2) convergent validity, (3) known group validity, and (4) predictive validity of the ICF Generic-6.
Design
Multicenter prospective cohort study.
Setting
Fifty hospitals from 20 provinces of Mainland China.
Participants
A total of 4510 patients from departments of rehabilitation, orthopedics, neurology, cardiology, pneumology, and cerebral surgery of the participating hospitals with different health conditions were included in this study.
Intervention
Not applicable.
Main Outcome Measures
The assessment was undertaken by nurses with ICF Generic-6 in combination with a numeric rating scale. Interrater reliability was evaluated with intraclass correlation coefficients (ICC). Convergent validity was evaluated with Spearman correlation coefficients between ICF Generic-6 and Medical Outcomes Short Form (SF)-12 items. Known group validity was examined by comparing discharge scores between different discharge destinations. Predictive validity was determined by using ICF Generic-6 baseline scores for estimating length of hospital stay with a loglogistic survival model with gamma shared frailty and cost of in-hospital treatment with a mixed effects generalized linear regression model of the gamma family.
Results
The interrater reliability of items and score of ICF Generic-6 was good with ICCs ranging from 0.67-0.87. ICF Generic-6 items were further correlated with respective SF-12 items. Discharge scores of patients differed significantly by discharge destination. The ICF Generic-6 admission score was a significant predictor of length of stay and treatment cost.
Conclusions
The ICF Generic-6 administered in combination with a 0-10 numeric rating scale is a reliable and valid tool for the collection of minimal information on functioning across various clinical settings.
Background: Current health systems are increasingly challenged to meet the needs of a growing number of patients living with chronic and often multiple health conditions. The primary outcome of care, it is argued, is not merely curing disease but also optimizing functioning over a person’s life span. According to the World Health Organization, functioning can serve as foundation for a comprehensive picture of health and augment the biomedical perspective with a broader and more comprehensive picture of health as it plays out in people’s lives. The crucial importance of information about patient’s functioning for a well-performing health system, however, has yet to be sufficiently appreciated.
Methods: This paper argues that functioning information is fundamental in all components of health systems and enhances the capacity of health systems to optimize patients’ health and health-related needs.
Results and conclusion: Beyond making sense of biomedical disease patterns, health systems can profit from using functioning information to improve interprofessional collaboration and achieve cross-cutting disease treatment outcomes.
- Implications for rehabilitation
- Functioning is a key health outcome for rehabilitation within health systems.
- Information on restoring, maintaining, and optimizing human functioning can strengthen health system response to patients’ health and rehabilitative needs.
- Functioning information guides health systems to achieve cross-cutting health outcomes that respond to the needs of the growing number of individuals living with chronic and multiple health conditions.
- Accounting for individuals functioning helps to overcome fragmentation of care and to improve interprofessional collaboration across settings
Background
The International Classification of Functioning, Disability and Health (ICF) can serve as reference for standardized documentation of health in clinical practice.
Purpose
This study aims to bridge the gap between the ICF and occupational therapy specific concepts, represented by occupational therapy models and their derived assessments.
Method
Occupational therapy assessments in relation to their models were systematically linked to the ICF, and a compatibility analysis was conducted. To strengthen reliability of the linkings, feedback from the respective assessment hosts was obtained.
Findings
Linking tables were developed for the Assessment of Motor and Process Skills, the Canadian Occupational Performance Measure, and the Model of Human Occupation Screening Tool. Similarities and differences between the ICF and the three assessments and their associated models show how they differ from and complement each other.
Implications
The findings of this study lay the foundation for standardized documentation in occupational therapy and enhance the practicability of the ICF.