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

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

group.

AIMS

The aims of WFNR SIG-MAC group are:

1. Encouraging awareness on burden of neurological diseases using common classification and

assessment tools.

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;

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

WFNR

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.

SIG-MAC Coordinator

Scientific Direction, Neurological Institute C. Besta IRCCS Foundation

Via Celoria 11, 20133 Milan (Italy)

leonardi@istituto-besta.it

Tel. +39 02 23942709

Fax. +30 02 2363973

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