Development of ICF Core Sets for Multiple Sclerosis (MS)

Jürg Kesselring (Valens, Switzerland), Michaela Coenen (Munich, Germany)

Multiple sclerosis (MS) can follow a variety of clinical courses and is unpredictable in terms of prognosis. Problems in functioning in MS can vary widely from time to time in a given individual and from individual to individual. Among the most common problems, with varying degrees of severity, are fatigue, weakness, impaired balance and gait, spasticity, tremor and ataxia, problems with vision, compromised cognition, bladder, bowel and sexual dysfunction, and sensory impairment, especially numbness or parasthesias. These manifestations, in various combinations, can have significant impact on independence, employability, activities of daily living and overall quality of life.
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 in Switzerland, the ICF Research Branch of the WHO at the Ludwig-Maximilian University in Munich, 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 ICF Core Sets for MS will be defined at an ICF Core Set Consensus Conference which will integrate evidence from the following preparatory studies: (1) a systematic review of measures focusing on individuals with MS, (2) a qualitative study using focus groups and individual interviews, (3) an expert survey with experts from all over the world and from different health professions and backgrounds, and (4) an empirical cross-sectional study with individuals with MS.
The information collected from these preparatory studies will be presented 2008 in the Valens Rehabilitation Centre 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 Set for MS.

For more information contact:Michaela Coenen