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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.
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.
Background: The International Classification of Functioning, Disability and Health (ICF) is the World Health Organization’s standard for describing health and health-related states. Examples of how the ICF has been used in Electronic Health Records (EHRs) have not been systematically summarized and described yet.
Objectives: To provide a systematic review of peer-reviewed literature about the ICF’s use in EHRs, including related challenges and benefits.
Methods: Peer-reviewed literature, published between January 2001 and July 2015 was retrieved from Medline®, CINAHL®, Scopus®, and ProQuest® Social Sciences using search terms related to ICF and EHR concepts. Publications were categorized according to three groups: Requirement specification, development and implementation. Information extraction was conducted according to a qualitative content analysis method, deductively informed by the evaluation framework for Health Information Systems: Human, Organization and Technology-fit (HOT-fit).
Results: Of 325 retrieved articles, 17 publications were included; 4 were categorized as requirement specification, 7 as development, and 6 as implementation publications. Information regarding the HOT-fit evaluation framework was summarized. Main benefits of using the ICF in EHRs were its unique comprehensive perspective on health and its interdisciplinary focus.
Main challenges included the fact that the ICF is not structured as a formal terminology as well as the need for a reduced number of ICF codes for more feasible and practical use.
Conclusion: Different approaches and technical solutions exist for integrating the ICF in EHRs, such as combining the ICF with other existing standards for EHR or selecting ICF codes with natural language processing.
Though the use of the ICF in EHRs is beneficial as this review revealed, the ICF could profit from further improvements such as formalizing the knowledge representation in the ICF to support and enhance interoperability.
As part of international efforts to develop and implement national models including the specification of ICF-based clinical data collection tools, the Italian rehabilitation community initiated a project to develop simple, intuitive descriptions of the ICF Rehabilitation Set, highlighting the core concept of each category in user-friendly language.
This paper outlines the Italian experience in developing simple, intuitive descriptions of the ICF Rehabilitation Set as an ICF-based clinical data collection tool for Italy.Consensus process.Expert conference.
Multidisciplinary group of rehabilitation professionals.The first of a two-stage consensus process involved developing an initial proposal for simple, intuitive descriptions of each ICF Rehabilitation Set category based on descriptions generated in a similar process in China.
Stage two involved a consensus conference. Divided into three working groups, participants discussed and voted (vote A) whether the initially proposed descriptions of each ICF Rehabilitation Set category was simple and intuitive enough for use in daily practice.
Afterwards the categories with descriptions considered ambiguous i.e. not simple and intuitive enough, were divided among the working groups, who were asked to propose a new description for the allocated categories. These proposals were then voted (vote B) on in a plenary session.
The last step of the consensus conference required each working group to develop a new proposal for each and the same categories with descriptions still considered ambiguous.
Participants then voted (final vote) for which of the three proposed descriptions they preferred.Nineteen clinicians from diverse rehabilitation disciplines from various regions of Italy participated in the consensus process. Three ICF categories already achieved consensus in vote A, while 20 ICF categories were accepted in vote B.
The remaining 7 categories were decided in the final vote.The findings were discussed in light of current efforts toward developing strategies for ICF implementation, specifically for the application of an ICF-based clinical data collection tool, not only for Italy but also for the rest of Europe.
Promising as minimal standards for monitoring the impact of interventions and for standardized reporting of functioning as a relevant outcome in rehabilitation.
Clinical assessment schedule (CLAS) is a core part of the ICF-based implementation of functioning reporting across health conditions and along the continuum of care.
The Physical and Rehabilitation Medicine Section and Board of the European Union of Medical Specialists (UEMS PRM) workshop held in January 2016 aimed to develop and specify a CLAS within the context of rehabilitation services.
UEMS PRM Workshop in Nottwil, Switzerland, January 2016.PRM physicians representatives from 12 European countries, as well as Israel and Japan, mostly delegates of UEMS PRM Section and Board, and experts with other rehabilitation professional backgrounds.Participants were divided into 6 working groups and asked to specify what functioning aspects would be essential to document using the available ICF sets for the identified rehabilitation services contained in the newly developed service classification (ICSO-R): acute, post-acute and long-term rehabilitation services.
The 7 ICF Generic and 23 Rehabilitation Set categories were confirmed as well as specific health condition categories for acute rehabilitation services (mobile team), for postacute rehabilitation services (general outpatient rehabilitation, musculoskeletal and neurological rehabilitation, as well as specialized SCI rehabilitation), and for long-term rehabilitation services (day clinic and rehabilitation provided in the community). While general principles of the CLAS were defined, the need to align the CLAS for a specific service, as well as across services along the continuum of care was highlighted.
All groups deliberated on this topic; however, no conclusive statement was presented yet.The groups recognized a need for a systematic effort to identify data collection tools currently used.CLASs will serve in the future to ensure that functioning information is systematically and consistently collected across services, and thus respond also to various global reports and initiatives which stress the need for improving data collection on people's functioning.