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The International Spinal Cord Injury (InSCI) community survey has been developed to collect internationally comparable data on the lived experience of persons with spinal cord injury (SCI) in all 6 WHO regions.
The InSCI survey provides a crucial first step to generate evidence on functioning, health maintenance, and subjective well-being in persons with SCI globally.
A major challenge in setting up the InSCI community survey was to develop a data model and questionnaire that comprehensively captures what matters to people and, at the same time, is feasible and parsimonious in terms of participant’s burden.
This paper outlines the components of the InSCI data model and presents the question selection to operationalize the data model along the 4 guiding principles of efficiency, feasibility, comparability, and truth and discrimination.
The data model consists of 6 components operationalized with 125 questions including functioning (n = 28 body functions and structures; n = 42 activities and participation), contextual factors (n = 26 environmental; n = 19 personal factors), lesion characteristics (n = 2), and appraisal of health and well-being (n = 8).
The InSCI questionnaire presents an efficient and feasible solution with satisfying comparability to other populations; however, its validity and reliability still needs to be confirmed.
Objective: To identify candidate categories for brief International Classification of Functioning, Disability and Health (ICF) Core Sets for the reporting and measurement of functioning in patients in the acute hospital.
Design: Prospective multi-centre cohort study.
Patients: Patients receiving rehabilitation interventions for musculoskeletal, neurological or cardiopulmonary injury or disease in acute hospitals.
Methods: Functioning and contextual factors were coded using the ICF. The criterion for selecting candidate categories for the brief ICF Core Sets was based on their ability to discriminate between patients with high or low functioning status. Discrimination was assessed using multivariable regression models, the independent variables being all of the ICF categories of the respective comprehensive ICF Core Set. Analogue ratings of overall functioning as reported by patients and health professionals were used as dependent variables.
Results: A total of 391 patients were included in the study (91 neurological, 109 cardiopulmonary, 191 musculoskeletal), mean age 63.4 years, 50.1% female. Selection yielded 33 categories for neurological, 31 for cardiopulmonary, and 30 for musculoskeletal.
Conclusion: The present selection of categories can be considered an initial proposal, serving to identify the ICF categories most relevant for the practical assessment and monitoring of functioning in patients with acute neurological, cardiopulmonary, and musculoskeletal conditions.
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.
Introduction: Two widely used outcome measures to assess functioning in neurological rehabilitation are the Functional Independence Measure (FIM™) and the Barthel Index.
The current study aims to establish the equivalence of the total score of the FIM™ motor scale and the Barthel Index through the application of the International Classification of Functioning, Disability and Health, and Rasch measurement theory.
Methods: Secondary analysis of a large sample of patients with stroke, spinal cord injury, and multiple sclerosis, undergoing rehabilitation was conducted. All patients were assessed at the same time on both the FIM™ and the Barthel Index. The International Classification of Functioning, Disability and Health Linking Rules were used to establish conceptual coherency between the 2 scales, and the Rasch measurement model to establish an exchange of the total scores.
Results: Using the FIM™ motor scale, items from both scales linked to the International Classification of Functioning, Disability and Health d4 Mobility or d5 Self-care chapters. Their co-calibration satisfied the assumptions of the Rasch model for each of 3 diagnostic groups. A ceiling effect was observed for the Barthel Index when contrasted against the FIM™ motor scale.
Conclusion: Having a Rasch interval metric to transform scores between the FIM™ motor scale and Barthel Index is valuable for monitoring functioning, meta-analysis, quality audits and hospital benchmarking.
In this methodological note on applying the ICF in rehabilitation, we introduce suitable tools that allow us to document comprehensively and systematically the lived experience of health to guide clinical practice, the management of services, evidence-informed policy and scientific inquiry.
The objective of this methodological note is to present the currently available tools with respect to four questions: 1) what ICF domains to document; 2) what perspective to take; 3) what data collection tools to apply; and 4) which approach to use for reporting. The application of these tools is illustrated using the Swiss Spinal Cord Injury (SwiSCI) Cohort Study.
Existing ICF Sets provide a practical approach for identifying the domains to document. One can document from the perspective of biological health, lived health, and appraised health. For identifying suitable data collection tools, either existing tools can be linked to the ICF or available ICF-based data collection tools can be used.
For reporting, an interval scale metric is suggested. The four step approach presented provides users with a logical sequence to follow when planning the documentation of functioning using the ICF as a health information reference system in practice and research.
Objective
Our aim was to specify the requirements of an architecture to serve as the foundation for standardized reporting of health information and to provide an exemplary application of this architecture.
Methods
The World Health Organization’s International Classification of Functioning, Disability and Health (ICF) served as the conceptual framework. Methods to establish content comparability were the ICF Linking Rules. The Rasch measurement model, as a special case of additive conjoint measurement, which satisfies the required criteria for fundamental measurement, allowed for the development of a common metric foundation for measurement unit conversion. Secondary analysis of data from the North Yorkshire Survey was used to illustrate these methods. Patients completed three instruments and the items were linked to the ICF. The Rasch measurement model was applied, first to each scale, and then to items across scales which were linked to a common domain.
Results
Based on the linking of items to the ICF, the majority of items were grouped into two domains, Mobility and Self-care. Analysis of the individual scales and of items linked to a common domain across scales satisfied the requirements of the Rasch measurement model. The measurement unit conversion between items from the three instruments linked to the Mobility and Self-care domains, respectively, was demonstrated.
Conclusions
The realization of an ICF-based architecture for information on patients’ functioning enables harmonization of health information while allowing clinicians and researchers to continue using their existing instruments. This architecture will facilitate access to comprehensive and consistently reported health information to serve as the foundation for informed decision-making.
Objective: To identify candidate categories for International Classification of Functioning, Disability and Health (ICF) Core Sets for the reporting and clinical measurement of functioning in older patients in early post-acute rehabilitation facilities.
Design: Prospective multi-centre cohort study. Patients: Older patients receiving rehabilitation interventions in early post-acute rehabilitation facilities.
Methods: Functioning was coded using the ICF. The criterion for selecting candidate categories for the brief ICF Core Sets was based on their ability to discriminate between patients with high or low functioning status. Discrimination was assessed using multivariable regression models, the independent variables being all of the ICF categories of the respective comprehensive ICF Core Set. Analogue ratings of overall functioning as reported by patients and health professionals were used as dependent variables.
Results: A total of 209 patients were included in the study, mean age 80.4 years, 67.0% female. Selection yielded a total of 29 categories for the functioning part and 9 categories for the contextual part of the ICF.
Conclusion: The present selection of categories can be considered an initial proposal, serving to identify the issues most relevant for the clinical assessment and monitoring of functioning in older patients undergoing early post-acute rehabilitation.
Objective: To identify candidate categories for International Classification of Functioning, Disability and Health (ICF) Core Sets for the reporting and measurement of functioning in patients in early post-acute rehabilitation facilities.
Design: Prospective multi-centre cohort study.
Patients: Patients receiving rehabilitation interventions for musculoskeletal, neurological or cardiopulmonary injury or disease in early post-acute rehabilitation facilities.
Methods: Functioning was coded using the ICF. The criterion for selecting candidate categories for the ICF Core Sets was based on their ability to discriminate between patients with high or low functioning status. Discrimination was assessed using multivariable regression models, the independent variables being all of the ICF categories of the respective comprehensive ICF Core Set. Analogue ratings of overall functioning as reported by patients and health professionals were used as dependent variables.
Results: A total of 165 patients were included in the study (67 neurological, 37 cardiopulmonary, 61 musculoskeletal), mean age 67.5 years, 46.1% female. Selection yielded 38 categories for neurological, 32 for cardiopulmonary, and 31 for musculoskeletal.
Conclusion: The present selection of categories can be considered an initial proposal, serving to identify the issues most relevant for the assessment and monitoring of functioning in patients undergoing early post-acute rehabilitation for neurological, cardiopulmonary, and musculoskeletal conditions.
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.
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.