The development of ICF Core Sets for multiple sclerosis

With the recent approval of the International Classification of Functioning, Disability, and Health (ICF) by the World Health Assembly there is now an universally accepted framework to classify and describe functioning, disability and health in individuals with a health condition (e.g. multiple sclerosis (MS)). Since the ICF classification with more than 1400 categories is not applicable in clinical practice, tools such as ICF Core Sets are needed.

Since functioning is an important outcome for individuals with MS, the ICF Core Sets for MS are being developed to link this health condition to salient ICF categories of functioning. The project is being funded by the Hertie Foundation and is a cooperative effort of the Department of Neurorehabilitation at the Valens Rehabilitation Centre (Switzerland), the ICF Research Branch of the WHO at the Ludwig-Maximilian University in Munich (Germany), the Multiple Sclerosis International Federation (MSIF), the International Society of Physical Medicine and Rehabilitation (ISPMR), and the Classification, Assessment and Surveys (CAS) team at WHO.

The objective of the project is the development of ICF Core Sets for MS (fig. 1). The ICF Core Sets for MS will be defined at a Consensus Conference which will integrate evidence from the following preparatory studies: (a) Systematic review: The objective of the systematic review is to identify measures and outcomes used in studies involving patients with MS, and to identify and quantify the concepts contained in these measures and outcomes. (b) Qualitative study: The objectives of the qualitative study are to explore and understand the perspective of MS patients on functioning and health using focus groups and individual interviews, and to identify concepts of functioning and health important to these individuals. (c) Expert survey: The objective of the expert survey is to gather the opinion of experts based on their clinical experience about the most relevant and typical areas to be considered in persons with MS. (d) Cross-sectional study: The objective of the cross-sectional study is to describe functioning and health of patients with MS to assess the subjective appraisal of health and well-being.

The information collected from these preparatory studies will be presented at an ICF Core Set Consensus Conference to selected experts in the field of MS. Following a multi-stage decision process, the experts will agree on the ICF categories to be included in the ICF Core Sets for MS.