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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: 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.