1. Special Interest Group on Measurement, Assessment, Classification
SIG-MAC of WFNR
Since 2001, date of ICF Classification publication, a great interest has been arising on the outcome
of rehabilitation, in particular in neurological settings, although there are only few publication
specially focussing on ICF and neurorehabilitation, on ICF and rehabilitation and on the utilization
of “functioning” as outcome of rehabilitation processes.
The outcome of rehabilitation has scientific implication that, in many countries and health systems,
are social and political too. The burden of neurological disease is growing in Europe and
worldwide, and the possibility of treatment and rehabilitation have been seriously influenced by
recent available techniques and tools for rehabilitation. Researches in the brain sciences now hold
the promise of therapies that halt and even reverse neurodegeneration, of better diagnostic tools,
neural prostheses for the paralysed and computer-based rehabilitation techniques. Anyway, the
recently published WHO/WFN Survey results clearly demonstrate that there are inadequate
resources for treating patients with neurological disorders in most parts of the world, and highlight
inequalities in the access to neurological care across different populations, and in particular in those
living in low-income countries and in developing regions of the world. It is indeed clear that results
of high-income countries research will be of benefit for the whole international community and that
worldwide commitment on solving the public health impact of brain disorders will also benefit from
investments done in these countries and widespread to all the other countries.
Anyway, one of the most relevant points of weakness is represented by the difficulty in measuring
and classifying what is the ongoing rehabilitative process and the achieved results, together with the
difficulty of having cross-country comparable data and with the difficulty of having a common
language for the multidisciplinary teams working with the patient. One of the most important
problems to be faced, in public health sector, deals with the disharmony of definitions and
measurements of disability. In this moment, worldwide comparable data about functioning and
disability are simply not available. The primary reason for this is that data on disability are not
consistently gathered because some countries define disability in terms of performance levels in
employment or other social activities, while others define it exclusively in medical or rehabilitative
terms. This lack of homogeneity reflects the lack of a common model of disability, which
preventins countries from taking common initiatives in clinical and rehabilitation practice, so as in
the fields of disability policies, employment, health and social interventions.
In order to discuss all the critical points regarding the utilization and implementation of ICF-based
neurorehabilitation assessments and measurements tools, the WFNR SIG-MAC group wishes to
2. create a specific website where the WFNR members can interact through a forum facility and where
some rehabilitative information can be found. Members will be invited to visit the website to share
the experiences, to collect the evidences for neurorehabilitation techniques efficacy and to discuss
ideas and solutions on these themes. The ICF model of functioning and disability is a necessary
cultural and scientific background, given that it takes the centrality of disability in the human
condition as core concept, that in ICF terms is called the “universality of disability”. Disability
issues have to be considered for their association with chronic illnesses, but at least with standard
risk factors (smoke, alcohol consumption, drug abuse) and responsiveness of health systems too.
The publication of ICF-CY, children and youth version and its related instruments, expected in
2007, will allow data collection, measurement and comparison along all the life-cycle of people
with neurological conditions. SIG-MAC members will be invited from specializations that from
childhood cover the whole life-span. Once the ICF model is firming in place within the
methodology of risk analysis, it will become obvious that there is another set of risk factors that
should be investigated, namely those associated with decreased levels of participation.
Environmental barriers are risk factors for disability, and should be investigated as such. In
particular, the role of stigmatizing attitudes and discriminatory behaviours in the reduction of levels
of participation for persons with decrements in health condition. Outcome of rehabilitation,
qualitative analysis, performance and participation evaluation will be main focus of SIG-MAC
The aims of WFNR SIG-MAC group are:
1. Encouraging awareness on burden of neurological diseases using common classification and
2. Sharing and comparing clinical innovations and research in the field of disability and
neurology that is becoming increasingly important, both because of the number of cases and
because of the enormity and complexity of the challenges that it produces;
3. Making available up-to-date, validated scientific information to all Members, to support the
establishment of the structures and centres that are ever more frequently required;
4. Creating suitable conditions such that the WFNR and Members of the Special Interest
Group can rapidly become reference figures at an international level in this sector;
5. Offering a further reason for joining the WFNR and the member National Societies, for all
those who are involved or interested in the process of data comparability, clinical
measurement, outcome evaluation and rehabilitation of neurological patients;
3. 6. Create collaboration with other Scientific Societies and different International bodies,
particularly with those involved with ICF and related tools implementation and use.
To achieve these aims the instruments could be :
1. periodic meetings within the WFNR Congress, but also at other scientific (national or
international) events if appropriate;
2. a web-site dedicated to creating a continuous forum for information and exchange of ideas, a
data-base and a mailing-list;
3. organization of specific scientific initiatives (events, journal and publications) both
internationally and nationally, also perhaps in collaboration with other interested Scientific
Societies and other international bodies (WHO, association of patients, families and NGOs).
The Special Interest Group will have an organization based on:
1. Coordinator, referent for the SIG-MAC Management Committee and at the meantime to
2. Management Committee composed by some active members from different Countries,
3. General Board, including all members interested to collaborate and willing to devote some
of their time to the necessary activities, representing all different countries and selected
among the members of the WFNR.
In order to have more precise and complete information about the clinical and research practice of
SIG-MAC members, a questionnaire will be developed and distributed before WFNR congress
2008, to gather their situations, opinion and interests, so that it will be possible to set-up and
organize SIG-MAC activities, the results will be available for Rio 2008.
Matilde Leonardi, M.D.
Scientific Direction, Neurological Institute C. Besta IRCCS Foundation
Via Celoria 11, 20133 Milan (Italy)
Tel. +39 02 23942709
Fax. +30 02 2363973
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