Purpose: To identify the preliminary comprehensive and brief core sets for multiple sclerosis (MS), in a Delphi process using the International Classification of Functioning, Disability and Health (ICF).
Method: Focus groups and a consensus process were used to identify ICF core sets for MS. This included: preliminary ICF studies; empirical patient data collection for 101 MS participants; review of the evidence base and treatment in MS literature followed by a Delphi exercise with 23 physicians and allied health professionals in Melbourne, Australia.
Results: One hundred and forty-four (40%) second level ICF categories were selected by 23 participants in three rounds. The comprehensive MS ICF core set includes 34 (24%) categories from the component 'body function', six (4%) categories from 'body structures', 68 (47%) from 'activities and participation' and 36 (25%) from the component 'environmental' factors. Ten categories in 'personal factors' in MS were also suggested by the participants after intensive discussions. The brief set comprises 30 categories, 21% of categories in the comprehensive core set.
Conclusion: Consensus expert opinion can use ICF categories to identify the core set for MS which reflects disease complexity and care burden for persons' with MS. Further research is needed to identify ICF categories of relevant personal factors to improve our understanding of the large social and cultural variance associated with them.