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The development of ICF Core Sets for multiple sclerosis: results of the International Consensus Conference

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Abstract

To systematically and comprehensively describe functioning and disability in Multiple sclerosis (MS), practical tools based on the International Classification of Functioning, Disability and Health (ICF), such as ICF Core Sets, are needed. Objective: to report on the results of an evidence-based International Consensus Conference to develop the Comprehensive and Brief ICF Core Set for MS. A formal and iterative decision-making and consensus process was undertaken, involving the integration of evidence from preparatory studies (expert survey, systematic literature review, qualitative study, empirical cross-sectional study) and expert opinion. The decision-making and consensus process included discussions and voting in working groups and plenary sessions involving selected international experts from different health professions. Twenty-one experts from 16 countries selected 138 ICF categories for the Comprehensive ICF Core for MS (40 Body functions, 7 Body structures, 53 Activities and Participation categories and 38 Environmental factors) and 19 categories for the Brief ICF Core Set for MS (8 Body functions, 2 Body structures, 5 Activities and Participation categories, 4 Environmental factors). An evidence-based and formal decision-making consensus process led to the approval of ICF Core Sets for MS which should be further validated.

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Acknowledgments

This project was funded by the Gemeinnützige Hertie-Stiftung (1.01.1/06/008) and guided by a steering committee composed of the following members: Jenny Freeman, Jürg Kesselring, Fary Khan, Nenad Kostanjsek, Eija Luoto, John Melvin, Bhim Singhal, Gerold Stucki, Silvia Tenembaum and Alan Thompson. We are most grateful for the contributions made by the following experts attending the consensus conference: Bernd Anderseck, Fernando Javier Cáceres, Sheela Chitnis, Peter Flachenecker, Jenny Freeman, Marina Govaerts, Ahmed Hassan Al Izzeldin, Jutta Hinrichs, Phu Hoang, Jelka Jansa, Fary Khan, Eva Månsson Lexell, Deborah Miller, Marta Renom Guiteras, Somporn Pan Sungkarat, Caroline Stevens, Alexa Stuifbergen, Claude Vaney, Liina Vahter, Annamarie Vogt and Ernest Willoughby. We would like to thank Sven Becker, Nora Fayed, Heinrich Gall, Lisa Holper, Sandra Kus and Carla Sabariego for their invaluable support during the conference.

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Correspondence to Alarcos Cieza.

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The responsibility for the content of this publication lies with the ICF Research Branch.

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Coenen, M., Cieza, A., Freeman, J. et al. The development of ICF Core Sets for multiple sclerosis: results of the International Consensus Conference. J Neurol 258, 1477–1488 (2011). https://doi.org/10.1007/s00415-011-5963-7

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