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  1. 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. 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 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;
  3. 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 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
  4. 4. Bibliography 1. Battaglia M, Russo E, Bolla A, Chiusso A, Bertelli S, Pellegri A, Borri G, Martinuzzi A. (2004) International Classification of Functioning, Disability and Health in a cohort of children with cognitive, motor, and complex disabilities. Dev Med Child Neurol. 46(2):98-106. 2. Beckung E, Hagberg G. (2002) Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy. Dev Med Child Neurol. 44(5):309-16. 3. Bilbao A, Kennedy C, Chatterji S, Ustun B, Barquero JL, Barth JT. (2003) The ICF: Applications of the WHO model of functioning, disability and health to brain injury rehabilitation. NeuroRehabilitation. 18(3):239-50. 4. Colver A; SPARCLE Group. (2006) Study protocol: SPARCLE--a multi-centre European study of the relationship of environment to participation and quality of life in children with cerebral palsy. BMC Public Health. 6:105. 5. Corrigan JD, Bogner J. (2004) Latent factors in measures of rehabilitation outcomes after traumatic brain injury. J Head Trauma Rehabil. 19(6):445-58. 6. Geyh S, Kurt T, Brockow T, Cieza A, Ewert T, Omar Z, Resch KL. (2004) Identifying the concepts contained in outcome measures of clinical trials on stroke using the International Classification of Functioning, Disability and Health as a reference. J Rehabil Med. (44 Suppl):56-62. 7. Grill E, Lipp B, Boldt C, Stucki G, Koenig E. (2005) Identification of relevant ICF categories by patients with neurological conditions in early post-acute rehabilitation facilities. Disabil Rehabil. 27(7-8):459-65. 8. Iezzoni LI, Greenberg MS. (2003) Capturing and classifying functional status information in administrative databases. Health Care Financ Rev. 24(3):61-76. 9. Lenker JA, Paquet VL. (2003) A review of conceptual models for assistive technology outcomes research and practice. Assist Technol. 15(1):1-15. 10. Leonardi M, Bickenbach J, Kostanjsek N, Ustun TB, Chatterji S on behalf of the MHADIE consortium (2006) The definition of disability: what is in a name? Lancet, 386(9543):1219-21 11. Olesen J, Leonardi M (2003) The burden of brain disease in Europe. Eur J Neurol. 10: 471-77 12. Rentsch HP, Bucher P, Dommen Nyffeler I, Wolf C, Hefti H, Fluri E, Wenger U, Walti C, Boyer I. (2003) The implementation of the 'International Classification of Functioning,
  5. 5. Disability and Health' (ICF) in daily practice of neurorehabilitation: an interdisciplinary project at the Kantonsspital of Lucerne, Switzerland. Disabil Rehabil. 25(8):411-21. 13. Salter K, Jutai JW, Teasell R, Foley NC, Bitensky J, Bayley M. (2005) Issues for selection of outcome measures in stroke rehabilitation: ICF activity. Disabil Rehabil. 27(6):315-40. 14. WHO (2001) International Classification of Functioning, Disability and Health. WHO: Geneva, Switzerland