Development of ICF Core Sets for Multiple Sclerosis (MS)

The ICF Core Set development project for multiple sclerosis (MS) was a cooperative effort between Valens Rehabilitation Centre (Switzerland), the ICF Research Branch, the World Health Organisation (WHO), the Multiple Sclerosis International Federation (MSIF) and the International Society of Physical Medicine and Rehabilitation (ISPRM). The aim of the project was the development of ICF Core Sets to comprehensively describe functioning and disability of individuals with MS.

In the preparatory phase of the project, a systematic literature review, a qualitative study, an expert survey and a multicentre cross-sectional study were conducted. An international ICF consensus conference took place at the Valens Rehabilitation Centre, from 2-4 May 2008. The aim of the conference was to establish the Comprehensive and Brief ICF Core Sets for patients with MS. Twenty-one MS experts from 7 health professions (physicians, physiotherapists, occupational therapists, nurses, psychologists, speech and language therapists, and social workers) and from 16 countries decided which ICF categories are to be included in the ICF Core Sets for MS following a multi-stage, well-established decision- making and consensus process which integrated the results from the 4 preparatory studies.

138 ICF categories were selected for inclusion in the Comprehensive ICF Core for MS. These categories can be taken into account when conducting a comprehensive, multidisciplinary assessment. Out of the 138 Comprehensive ICF Core Set categories, 19 ICF categories were selected for the Brief ICF Core for MS. The Brief ICF Core Set can be used in assessing any patient with MS irrespective of the healthcare setting in which the individual is treated and when individual healthcare professionals and not a multidisciplinary team is involved.

Phase 2 of the project to test and validate the first version of the Comprehensive ICF Core Set for MS has started. The first phase 2 study aimed to validate the Comprehensive ICF Core Set for MS from the perspective of health professionals using the Delphi method. A total of 361 health professionals (nurses, occupational therapists, physicians, physical therapists, psychologists/neuropsychologists and speech and language therapist from 36 countries) participated in 6 three-round electronic mail surveys. The majority (93,5%) of the ICF categories in the Comprehensive ICF Core Set for MS was confirmed by the health professionals. However, there were ICF categories included in the Comprehensive ICF Core Set for MS which were not identified in any of the surveys and other categories that were named in 75% of the surveys but were not included in the Comprehensive ICF Core Set for MS. For further details about this validation study, kindly contact Dr. Michaela Coenen.

The final versions of the Comprehensive ICF Core Set for MS and the Brief ICF Core Set for MS will be established by performing further validation studies using different approaches (e.g. regression analyses). Besides validation, strategies for the implementation of the ICF Core Sets for MS in clinical practice should be developed.

The project was funded by "The Hertie Foundation" (Gemeinnützige Hertie-Stiftung).

For more information, feel free to contact the ICF Research Branch ().