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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.
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.