FINAL PROGRAMME AND ABSTRACT BOOK

Preceptorship on rehabilitation in multiple sclerosisValens, Switzerland - 20-22 September 2012

General information

VenueThe course takes place at the:

Klinik Valens Rehabilitation CenterCH-7317 Valens, SwitzerlandPhone: +41 81 303 11 11Fax: +41 81 303 11 00E-mail: info@klinik-valens.ch

LanguageThe official language of the course is English.

Scientific secretariatSerono Symposia International FoundationSalita di San Nicola da Tolentino, 1/b00187 Rome, Italy

Junior project manager: Simona GaudiosiTel.: +39 (0)6 420 413 308Fax: +39 (0)6 420 413 677E-mail: info@seronosymposia.org

Medical advisor: Federica Cerri

Serono Symposia International Foundation is a Swiss Foundation with headquarters in 14, rue du Rhône, 1204 Geneva, Switzerland

Organizing secretariatMeridiano Congress InternationalVia Sapri, 6 - 00185 Rome, ItalyCongress coordinator: David SlangenTel.: +39 (0)6 88595 250 - Fax: +39 (0)6 88595 234E-mail: d.slangen@meridiano.it

To know more visit: www.neurology.seronosymposia.org

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Preceptorship on rehabilitationin multiple sclerosis

Serono Symposia International Foundation course on:

Preceptorship on rehabilitation in multiple sclerosisValens, Switzerland - 20-22 September 2012

Aim of the courseThe aim of this CME course is to provide neurologists working in MS with a full immersion in physical rehabilitation approaches forMS patients.

Learning objectivesBy attending the course, participants will:• Be updated on neuroplasticity as a basis for neurorehabilitation approach• Discuss the use of protocols aimed at managing different physical impairment in MS and related psychological issues• Improve their skills in planning personalized rehabilitation protocols• Discuss case studies of MS patients undergoing rehabilitation treatments

Target audienceClinicians and scientists currently involved in MS management and interested in their knowledge and skills about rehabilitation.

AccreditationSerono Symposia International Foundation (www.seronosymposia.org) is accredited by the European Accreditation Council forContinuing Medical Education (EACCME®) to provide the following CME activity for medical specialists. The EACCME® is aninstitution of the European Union of Medical Specialists (UEMS), www.uems.net

The CME conference on: “Preceptorship on rehabilitation in multiple sclerosis” to be held in Valens, Switzerland on 20-22September 2012, is designated for a maximum of 12 (twelve) hours of European CME credits (ECMEC). Each medical specialistshould claim only those credits that he/she actually spent in the educational activity. EACCME® credits are recognized by theAmerican Medical Association towards the Physician's Recognition Award (PRA). To convert EACCME® credit to AMA PRA category1 credit, please contact the AMA.

This conference on: “Preceptorship on rehabilitation in multiple sclerosis” to be held in Valens, Switzerland on 20-22 September2012, has been submitted for CME accreditation from the Italian Ministry of Health.

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All Serono Symposia International Foundation programmes are organized solely to promote the exchange and dissemination of scientific and medical information. Noforms of promotional activities are permitted. There may be presentations discussing investigational uses of various products. These views are the responsibility of thenamed speakers, and do not represent an endorsement or recommendation on the part of Serono Symposia International Foundation. This programme is made possiblethanks to the unrestricted Educational grants received from: Arseus Medical, Celgene, Centre d’Esclerosi Multiple de Catalunya (Vall d'Hebron University Hospital),ComtecMed, Congrex, Cryo-Save, Datanalysis, Dos33, Esaote, European Society of Endocrinology, Ferring, Fondazione Humanitas, Fundación IVI, GlaxoSmithKlinePharmaceuticals, Johnson & Johnson Medical, ISFP International Society for Fertility Preservation, ISMH International Society of Men’s Health, K.I.T.E., Karl Storz,Lumenis, Merck Serono Group, PregLem, Richard Wolf Endoscopie, Sanofi-Aventis, Stallergenes, Stopler, Teva Pharma, Toshiba Medical Systems, Université Catholiquede Louvain (UCL), University of Catania.

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Learning effectiveness project

The world of CME is changing with many different live and online formats, and Serono Symposia International Foundation(SSIF) is continually trying to improve its CME activities.

With your participation in a structured series of evaluations, SSIF can provide cutting-edge learning activities designed to giveyou the greatest value from the time you invest.

SSIF is running the learning effectiveness project for this meeting.

During the conference you will be asked to answer some questions to evaluate your knowledge and opinions on the specifictopics that will be covered in these two days.

We also kindly ask you to assess the program in various domains such as whether you were satisfied with the meeting,whether it met the stated learning objectives, whether the contents were neutral and will be applicable to your daily practice.

After the event, you will be involved in two additional steps:

• Post-event: three weeks after the event we will email you a short questionnaire which will give you the opportunity to tellus how much of what you learned has had an affect on your know-how and daily practice.

• Follow-up: three-months after the event, we will contact you with the final questionnaire.

We will collate and analyse your responses and use the results to improve and develop our ongoing programs.

Of course, we commit to maintaining the confidentiality of the information you provide and we will inform you about the resultsof the process regarding the activity that you attended.

Thank you very much for participating in this project!

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Scientific organizer

Jürg KesselringDepartment of NeurorehabilitationValens Clinic Rehabilitation CenterValens, Switzerland

Serono Symposia International Foundation designed this programme in partnership with Valens Klinik.

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List of speakers and chairmen

Sylvan Albert Department of NeurorehabilitationValens Clinic Rehabilitation CenterValens, Switzerland

Rixt Althof Department of TherapyValens Clinic Rehabilitation CenterValens, Switzerland

Bernd Anderseck Department of TherapyValens Clinic Rehabilitation CenterValens, Switzerland

Jens Bansi Department of TherapyValens Clinic Rehabilitation CenterValens, Switzerland

Serafin Beer Department of NeurorehabilitationValens Clinic Rehabilitation CenterValens, Switzerland

Giancarlo ComiDepartment of NeurologyInstitute of Experimental NeurologyVita-Salute San Raffaele UniversityMilan, Italy

Urs N. GamperDepartment of TherapyValens Clinic Rehabilitation CenterValens, Switzerland

Louise HamiltonDepartment of TherapyValens Clinic Rehabilitation CenterValens, Switzerland

Jürg KesselringDepartment of NeurorehabilitationValens Clinic Rehabilitation CenterValens, Switzerland

Verena KesselringDepartment of NeurorehabilitationValens Clinic Rehabilitation CenterValens, Switzerland

Dawn LangdonDepartment of PsychologyRoyal Holloway university of LondonLondon, UK

Kurt LuyckxDepartment of NeurorehabilitationValens Clinic Rehabilitation CenterValens, Switzerland

Iris-Katharina Penner Department of NeurologyCognitive Psychology and MethodologyUniversity of BaselBasel, Switzerland

Alessandra Solari Neurological Institute C. BestaMilan, ItalyRIMS Rehabilitation in Multiple SclerosisEuropean Network for Best Practice and Research

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Scientific Programme20-22 September 2012

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Thursday - 20 September 2012

12.45 Registration

13.00 Serono Symposia International Foundation (SSIF)OpeningG. Comi, SSIF Scientific Committee President

13.15 Opening and introduction to MS RehabilitationCenter of ValensJ. Kesselring, Scientific Organizer

Chairman: S. Beer (Switzerland)

13.30 L1: Biological Basis of neuro-rehabilitationG. Comi (Italy)

14.00 L2: Overview on Neurorehabilitation, appliedNeuroplasticity J. Kesselring (Switzerland)

15.00 Coffee Break

15.30 Visit of the ClinicB. Anderseck / L. Hamilton (Switzerland)

16.00 CC1: Case Report / Patient DemonstrationB. Anderseck / L. Hamilton (Switzerland)

17.30 Discussion

18.00 End of the day

Session I

Friday - 21 September 2012

Chairman: J. Kesselring (Switzerland)

09.00 L3: Technical Aids / AssessmentsB. Anderseck (Switzerland)

09.45 CC2: Dysphagia in Multiple SclerosisS. Albert (Switzerland)

10.30 Coffee Break

Chairman: B. Anderseck (Switzerland)

11.00 CC3: Medical treatment / SpasticityS. Beer (Switzerland)

11.45 L4: Bladder problemsR. Althof (Switzerland)

12.30 Working Lunch

Chairman: V. Kesselring (Switzerland)

13.30 L5: ICF-Core SetsK. Luyckx (Switzerland)

14.15 L6: Cognitive rehabilitation:Assessment D. Langdon (UK)Intervention I.K. Penner (Switzerland)

15.00 Coffee Break

15.30 L7: Patient reported outcomes and health-relatedoutcomesA. Solari (Italy)

16.00 L8: Psychosomatic medicine / Social factorsV. Kesselring (Switzerland)

16.45 Discussion

17.00 End of the day

Session II

Saturday - 22 September 2012

Chairman: J. Kesselring (Switzerland)

09.00 CC4: Water therapyU.N. Gamper (Switzerland)

09.45 CC5: Sport therapyJ. Bansi (Switzerland)

10.30 Coffee Break

11.00 L9: FatigueJ. Kesselring (Switzerland)

12.00 Working Lunch

13.00 Closing session / Take home message

14.00 End of the Course

Session III

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Disclosure of faculty relationships

Serono Symposia International Foundation adheres to guidelines of the European Accreditation Council for Continuing MedicalEducation (EACCME) and all other professional organizations, as applicable, which state that programmes awarding continuingeducation credits must be balanced, independent, objective, and scientifically rigorous. Investigative and other uses for pharmaceuticalagents, medical devices, and other products (other than those uses indicated in approved product labeling/package insert for theproduct) may be presented in the programme (which may reflect clinical experience, the professional literature or other clinical sourcesknown to the presenter). We ask all presenters to provide participants with information about relationships with pharmaceutical ormedical equipment companies that may have relevance to their lectures. This policy is not intended to exclude faculty who haverelationships with such companies; it is only intended to inform participants of any potential conflicts so that participants may form theirown judgements, based on full disclosure of the facts. Further, all opinions and recommendations presented during the programmeand all programme-related materials neither imply an endorsement nor a recommendation on the part of Serono SymposiaInternational Foundation. All presentations represent solely the independent views of the presenters/authors.

The following faculty provided information regarding significant commercial relationships and/or discussions of investigational ornon-EMEA/FDA approved (off-label) uses of drugs:

Sylvan Albert Declared no potential conflict of interest.

Rixt Althof Declared to be member of a company advisory board, board of directors or other similar group:Coloplast, Clinical advisory board.

Bernd Anderseck Declared no potential conflict of interest.

Jens Bansi Declared no potential conflict of interest.

Serafin Beer Declared receipt of honoraria or consultation fees from Advisory Board meetings Fingolimod (Novartis).Declared to be member of a company advisory board, board of directors or other similar group: SwissAdvisory Board Fingolimod (Novartis).

Giancarlo Comi Declared receipt of honoraria or consultation fees from Serono Symposia International Foundation,Novartis, Teva Pharmaceutical Ind. Ltd., Sanofi-Aventis, Merck Serono, Bayer Schering, Biogen, andActelion.

Urs N. Gamper Declared no potential conflict of interest.

Jürg Kesselring Declared to be member of a company advisory board, board of directors or other similar group: Novartis(DSMR, GTY/BAF).

Verena Kesselring Declared no potential conflict of interest.

Dawn Langdon Declared receipt of grants and contract from Bayer Healthcare. Declared receipt of honoraria orconsultation fees from Bayer Healthcare, Biogen Idec, Serono Symposia International Foundation.Declared to participate to a company sponsored speaker’s bureau: Bayer Healthcare, Biogen Idec, SeronoSymposia International Foundation.

Kurt Luyckx Declared no potential conflict of interest.

Iris-Katharina Penner Declared to receipt grants and contracts from Bayer Switzerland, Biogen Idec, Roche. Declared receipt ofhonoraria or consultation fees from Actelion, Bayer pharma, Teva. Declared to be member of a companyadvisory board, board of directors or other similar group: Merck Serono.

Alessandra Solari Declared receipt of honoraria or consultation fees from Merck Serono and Genzyme. Declared to bemember of a company advisory board, board of directors or other similar group: Biogen Idec.

The following faculty have provided no information regarding significant relationship with commercial supporters and/or discussionof investigational or non-EMEA/FDA approved (off-label) uses of drugs as of 6 September 2012.

Louise Hamilton

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Abstracts

L1 - Biological Basis of neuro-rehabilitation

Abstract not in hand at the time of printing.

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Giancarlo ComiDepartment of Neurology, Institute of Experimental Neurology, Vita-Salute San Raffaele UniversityMilan, Italy

References:1 - Chappel SC, Howles C 1991 Reevaluation of the roles of luteinizing hormone and follicle-stimulating hormone in the ovulatory process. Human Reproduction 6 1206-1212. 2 - Filicori M, Cognigni GE, Pocognoli P et al. 2003 Current concepts and novel applications of LH activity in ovarian stimulation. Trends in Endocrinology and Metabolism 14,

267-273.

L2 - Overview on Neurorehabilitation, appliedNeuroplasticity

Re-organisation of structures and functions in the brain are the basis of learning. Plastic changes occur in normal as well as indiseased brains and can be enhanced by task-specific therapeutic interventions (Neurorehabilitation). Due to the variety ofsymptoms and functional deficits Multiple Sclerosis (MS) can lead to a broad range of functional impairments and handicap. Evenwith newer immunomudulating therapies, the course remains progressive. The symptoms themselves, loss of independence andparticipation in social activities are responsible for the progressive decline of quality of life. The main objective of a comprehensiverehabilitation program is to ease the burden of disease by improving self performance and independence. Restoration of function isnot the key effect of rehabilitation in MS. As rehabilitation measures have no direct influence on the ongoing disease process andprogression of the disease, compensation of functional deficits, adaptation and reconditioning together with other nonspecific effects(management of specific symptoms and impairments, emotional coping, self estimation) is more important in the longterm. Severalof the many symptoms of MS are amenable to drug therapies which have been proven in careful evidence-based analyses to beeffective (e.g. fatigue, spasticity, bladder, bowel and sexual disturbances, pain, cognitive dysfunctions etc). Newer studies in MSpatients show, that despite the ongoing progression of the disease process, rehabilitation is effective by improving personal activitiesand participation in social activities leading to better quality of life. After comprehensive inpatient rehabilitation, improvementoverlasts the treatment period for several months. Quality of life is correlated more with disability and handicap rather than withfunctional deficits and progression of the disease.

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Jürg KesselringDepartment of Neurorehabilitation, Valens Clinic Rehabilitation CenterValens, Switzerland

References:- Kesselring J, Comi G, Thompson AJ. Multiple Sclerosis – functional recovery and neurorehabilitation. Cambridge University Press 2010 - Serafin Beer, Fary Khan, Jürg Kesselring. Rehabilitation interventions in Multiple Sclerosis - An overview. J Neurol 2012 DOI 10.1007/s00415-012-6577-4- Mostert S, Kesselring J. Effect of pulsed magnetic resonance therapy on the level of fatigue in patients with multiple sclerosis – a randomised controlled trial.Multiple Sclerosis 2005; 11: 302-305- Kesselring J, Beer S. Symptomatic therapy and Neurorehabilitation in multiple sclerosis. The Lancet Neurology 2005; 4 (10); 643-652- Meyer-Heim A, Rothmaier M, Weder M, Kool J, Kesselring J. Advanced cooling - garment technology: functional improvements in thermosensitive patients withMultiple Sclerosis. 2006; 12: 1-6- Multiple Sclerosis Therapy Consensus Group (MSTCG) of the German Multiple Sclerosis Society. Symptomatic Treatment of Multiple Sclerosis. Eur Neurol 2006;56: 78-105- Kesselring J, Coenen M, Cieza A, Thompson A, Kostanjsek N, Stucki G. Developing the ICF Core Sets for Multiple Sclerosis to specify functioning. MultipleSclerosis 2008;14: 252-4- Holper, Coenen M, Weise A, Stucki G, Cieza A, Kesselring J. Characterizing functioning in MS using the ICF. J Neurol 2010; 257: 103-113 - Stützer P, Kesselring J. Wilhelm Uhthoff – a phenomenon. Int MS J 2008; 15; 90-93- Beer S, Manoglou D, Aschbacher B, Kool J Kesselring J. Robot-assisted gait training in MS – a randomised controlled trial. Multiple Sclerosis 2008; 14: 231-236

L3 - Technical Aids / Assessments

In the neurological rehabilitation of multiples sclerosis, technical aids and assistive devices play an important role. As the diseaseprogresses, the choice and adaptation of an optimal device can help ease participation in society. In the beginning stages of thedisease (up to EDSS 6) primarily walking aids like crutches and ankle orthoses are chosen. In the later stages, technical aids tendto lean towards choosing the optimal wheelchair and adaptations for ADL eg. Aids to maintain a level of independence. Theinterdisciplinary approach - mainly PT, OT and Orthotic Specialist work closely together to ensure optimal functioning and improvedpatient participation in everyday life.

In relation to the general development of the Healthcare Systems, cutting costs is always paramount. For this reason the benefitsand effects of therapy must be well documented and proven. Therefore Evidence based assessments in the Therapy setting are vital.These assessments should provide evidence of the effect of the therapeutic intervention.

The most widely-used assessments today conduct measurements almost exclusively at body-function level. In rehabilitation gearedtowards everyday life, however, it is necessary to have assessments which measure an activity at participation level.

To measure mobility the “gold standard” EDSS is often used, furthermore we use Tinetti Test, the Berg Balance Scale, the FunctionalReach Test, 20m Walking distance test and for endurance the 2 and 6 Minute Walking Test.

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Bernd AnderseckDepartment of Therapy, Valens Clinic Rehabilitation CenterValens, Switzerland

CC2 - Dysphagia in Multiple Sclerosis

Dysphagia in neurologic disorders can be a life threatening complication as well as a risk factor for comorbidity. Due to the possiblewidespread affection of the central nervous system in Multiple Sclerosis, patients are at risk for developing dysphagia. It isrecommended to screen patients for dysphagia which can also include technical evaluation. In the talk the principles of dysphagiamanagement in MS and neurologic disorders are reviewed and examples are provided. The management should not only includeevaluation of risk factors but also consider individual needs and regard food intake as an autonomic goal of rehabilitation.

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Sylvan AlbertDepartment of Neurorehabilitation, Valens Clinic Rehabilitation CenterValens, Switzerland

CC3 - Medical treatment / Spasticity

Despite the on-going advancement of disease modifying therapies, in the long-term a major part of MS patients continue toexperience various symptoms and functional deficits with complex interferences. Therefore symptomatic treatment andrehabilitation remain an important treatment option for MS patients.

Spastic syndromes are very common in multiple sclerosis (MS). Before starting treatment it should be noted that spasticity may alsohave a positive impact in some patients (i.e. compensation of weakness of lower limbs allowing standing and walking). Therefore,detailed evaluation of spasticity is important assessing pattern of spasticity, impact on daily life, secondary problems, and potentiallytriggering factors (i.e. urinary tract infections, pain, obstipation). Oral antispastic drugs (baclofen, tizanidine, diazepam, tolperisone)in general have a moderate, individually variable effect on spasticity, but its use is limited by adverse effects and the risk ofdeteriorating weakness. In selected MS patients with spasticity of the lower limbs not responding to other antispastic treatments,intrathecal baclofen (ITB) therapy may be a good alternative. ITB has been shown to be effective in reducing spasticity, spasms andpain, improving motor functions and quality of life. The first step evaluating ITB is assessing clinical benefit after a single intrathecaltest injection. In patients responding well to this test dose, ITB pump is implantated with gradually adaptation of intrathecal dose inthe early phase to find the optimal adjustment. In the long-term MS patients with ITB should be followed closely at a specializedcenter for pump refill and monitoring of possible treatment problems. It is important to note, that up to 45% may experiencecomplications (i.e. dislocation or disconnection of implanted catheter, pump dysfunction, overdose, withdrawal, infections). Ingeneral, however, ITB is well tolerated, and patients satisfaction is high. In MS patients with focal spasticity, especially of the lowerlimbs, botulinum toxin may be beneficial. Some patients with treatment resistant spasticity might respond to cannabinoids. Its use,however, is limited due to some concerns about possible adverse effects on cognition, and due to legal aspects.

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Serafin BeerDepartment of Neurorehabilitation, Valens Clinic Rehabilitation CenterValens, Switzerland

References:1 - Chappel SC, Howles C 1991 Reevaluation of the roles of luteinizing hormone and follicle-stimulating hormone in the ovulatory process. Human Reproduction6 1206-1212.

2 - Filicori M, Cognigni GE, Pocognoli P et al. 2003 Current concepts and novel applications of LH activity in ovarian stimulation. Trends in Endocrinology andMetabolism 14, 267-273.

L4 - Bladder problems

Abstract not in hand at the time of printing.

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Rixt AlthofDepartment of Therapy, Valens Clinic Rehabilitation CenterValens, Switzerland

References:1 - Chappel SC, Howles C 1991 Reevaluation of the roles of luteinizing hormone and follicle-stimulating hormone in the ovulatory process. Human Reproduction6 1206-1212.

2 - Filicori M, Cognigni GE, Pocognoli P et al. 2003 Current concepts and novel applications of LH activity in ovarian stimulation. Trends in Endocrinology andMetabolism 14, 267-273.

L5 - ICF-Core Sets

Multiple sclerosis (MS) is one of the most commonly diseases with long-term impact on functioning and disability in young adulthoodin Western Europe. MS is a highly complex disease with heterogeneous symptoms1, 2. Symptoms of MS can vary widely over time ina given individual and also from individual to individual and MS is unpredictable in terms of prognosis 3. These unpredictability andthe significant implications on performance of functioning, disability, quality of live and economic consequences makes therehabilitation for patients with MS (PwMS) and their relatives as well as for health professionals very challenging. An in-depthunderstanding of the impact of MS on disability and functioning is the basis for the optimal management of MS3.

Several frameworks and problem solving tools in rehabilitation has been proposed for clinical practice in rehabilitation 4, 5.

The WHO developed the International Classification of Functioning, Disability and Health (ICF) 6. The ICF is based on a bio-psycho-social perspective. The ICF Model provides a comprehensive framework for the description and the assessment of health- andhealth-related domains of functioning and disability and allows a shared terminology between health professionals. Body functions,-structures, activities, participation as well as environmental factors are described. Contextual factors represent the completebackground of an individual’s life and living. Environmental factors and personal factors can have a positive (facilitators) or negative(barriers) influence.

To implement and to facilitate the use of the ICF in clinical practice a validated Core Set of the ICF for MS has been recentlydeveloped7. A Core Set for MS is a pool of ICF categories relevant to PwMS. The aim of developing a Core Set is to include as fewcategories as possible to be practical and as many as necessary to sufficiently cover the spectrum of limitations in functioningexperienced by PwMS7.

The results of a systematic literature review, a qualitative study, an expert survey and a multicentre cross-sectional empirical studyprovide the basis for a multistage and evidence based consensus conference. 21 MS experts from different health professions from16 countries established a comprehensive and brief ICF Core Set for PwMS7. Contemporaneous PwMs described in different focusgroups the consequences of MS and developed a Core Set from the patient perspective 3.

The ICF Core Sets for PwMS have been validated by different professions and have been published 8,9.

The Core Sets for MS are now available for clinical practice and can be used for clinical decision making, goal setting as well as forimplementing a patient centred and evidence based rehabilitation for people with multiple sclerosis.

The development of the ICF Core Set for MS was a cooperative project between the Rehabilitation Centre Valens, the ICF ResearchBranch, the World Health Organisation (WHO), the Multiple Sclerosis International Federation (MSIF) and the International Societyof Physical Medicine and Rehabilitation (ISPRM).

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Kurt LuyckxDepartment of Neurorehabilitation, Valens Clinic Rehabilitation CenterValens, Switzerland

References:1 - Chappel SC, Howles C 1991 Reevaluation of the roles of luteinizing hormone and follicle-stimulating hormone in the ovulatory process. Human Reproduction6 1206-1212.

1 - Beer S, Khan F and Kesselring J. Rehabilitation measures in MS. MS Rehab J Neurol 2012; in Press2 - Freeman JA, Langdon DW, Hobart JC, Thompson AJ. The impact of inpatient rehabilitation on progressive multiple sclerosis. Ann Neurol 1997; 42:236-2443 - Coenen M, Basedow-Rajwich B, König N, Kesselring J, Cieza A. Functioning and disability in multiple sclerosis from the patient perspective. Chronic Illness

2011; 7(4): 291-3104 - Use of the ICF Model as a Clinical Problem-Solving Tool in Physical Therapy and Rehabilitation Medicine: W. Steiner et al. Physical Therapy. 2002; 82:1098-

11075 - Guide to Physical Therapist Practice. APTA, 20036 - World Health Organisation. International classification of functioning, disability and health: ICF. Geneva: WHO, 20017 - Coenen M, Cieza A, Freeman J, Khan F, Miller D, Weise A, Kesselring J, Members of the Consensus Conference. The development of ICF core sets for multiple

sclerosis: results of the International Consensus Conference. J Neurol 2011 Aug; 258(8):1477-888 - Berno S, Coenen M, Leib A, Cieza A, Kesselring J. Validation of the Comprehensive International Classification of Functioning, Disability, and Health Core Set

for multiple sclerosis from the perspective of physicians. J Neurol 2012; Published online: 24 January 20129 - Holper L, Coenen M, Weise A, Stucki G, Cieza A, Kesselring J. Characterization of functioning in multiple sclerosis using the ICF. J Neurol 2010; 257:103–113

L6 - Cognitive rehabilitation

1 - Department of Psychology, Royal Holloway university of London, London, UK2 - Department of Neurology, Cognitive Psychology and Methodology, University of Basel, Basel, Switzerland

AssessmentDawn Langdon

Cognitive impairment affects about half of people with MS and is known to impact negatively on employment, disease managementand other aspects of quality of life (1). Cognitive rehabilitation needs to be individually designed to address each person’s difficultiesand strengths. The profile of cognitive impairment in MS tends to be subtle and insidious at onset, with information processing speedbeing the most affected domain. This makes it hard to detect in conversation and at clinical consultation. Formal cognitiveassessment can be lengthy and requires specialist skills (2). Cognitive assessment is not routinely available outside of specialistcentres, which means that cognitive impairment may not be identified or appropriately addressed in the majority of MS patients.Validation of assessment scales is unavailable in many countries.The Brief Assessment of Cognitive Function in MS (BICAMS) project was initiated to address these needs. An expert committee wasconvened, rating candidate cognitive scales on psychometric qualities, international application, ease of administration, feasibilityand patient acceptability. The consensus recommendation was the Symbol Digit Modalities Test. With more time, the addition of theCalifornia Verbal Learning Test-II (learning trials) and the Brief Visuospatial Memory Test-Revised (learning trials) wasrecommended (3). BICAMS is designed for ease of use by health professionals without specialist neuropsychological training and tobe completed in 15 minutes. A dozen national validation projects are underway or planned (4). Current information is available atwww.BICAMS.net.

References:1 - Chappel SC, Howles C 1991 Reevaluation of the roles of luteinizing hormone and follicle-stimulating hormone in the ovulatory process. Human Reproduction6 1206-1212.

1 - Langdon DW. Cognition in multiple sclerosis. Curr Opin Neurol. 2011 Jun;24(3):244-9.2 - Benedict RH, Fischer JS, Archibald CJ, Arnett PA, Beatty WW, Bobholz J, Chelune GJ, Fisk JD, Langdon DW, Caruso L, Foley F, LaRocca NG, Vowels L,

Weinstein A, DeLuca J, Rao SM, Munschauer F. Minimal neuropsychological assessment of MS patients: a consensus approach. Clin Neuropsychol. 2002Aug;16(3):381-97.

3 - Langdon D, Amato M, Boringa J, Brochet B, Foley F, Fredrikson S, Hämäläinen P, Hartung HP, Krupp L, Penner I, Reder A, Benedict R. Recommendations fora Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS). Mult Scler. 2012 Jun;18(6):891-8. This paper is open access courtesy of BayerHealthcare.

4 - Benedict R, Amato MP, Boringa J, Brochet B, Foley F, Fredrikson S, Hamalainen P, Hartung H, Krupp L, Penner I, Reder A, Langdon D. Brief InternationalCognitive Assessment for MS (BICAMS): international standards for validation. BMC Neurol. 2012 Jul 16;12(1):55.

InterventionIris-Katharina Penner

Cognitive problems belong to the major symptoms in MS. In this context, the concept of cognitive rehabilitation, a method that hasbeen successfully applied to patients with brain injury or tumour, has been tested in several studies to improve cognitive functionsin MS patients. Contrary to the mostly positive results described in healthy elderly subjects and patients with stroke or tumour,results in the conducted MS studies were conflicting. This might primarily be explained by methodological limitations, since cognitiveintervention tools, study designs and outcome measures to prove efficacy were not comparable. However, by focusing on most recentstudies, benefits of cognitive intervention strategies seem to preponderate also in terms of affecting fatigue and quality of life. Oneelegant approach to monitor and quantify those benefits is to evaluate whether behavioural changes are mirrored by functionalchanges after treatment. Findings from several imaging studies suggest that MS patients can benefit from cognitive trainingirrespective of the severity of cognitive dysfunction, and that functional plasticity can be enhanced by neuropsychologicalintervention. Hence, besides the lack of well designed placebo-controlled randomized trials there is clinical as well as evidencecoming from brain imaging studies supporting the efficacy of cognitive rehabilitation in MS.

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Dawn Langdon, UK 1

Iris-Katharina Penner, Switzerland 2

L7 - Patient reported outcomes and health-relatedoutcomes

Over the last 20 years a paradigm shift has occurred within the scientific community on the assessment and monitoring of patienthealth status: In addition to conventional clinical endpoints, patient-reported outcomes (PROs) have gained importance as anoutcome criterion in both clinical research and routine care. Moreover, health authorities more and more require PRO data inaddition to safety and efficacy figures when making funding decisions (1). By providing information from a unique perspective, theuse of health-related quality of life and other PRO data enables clinicians to obtain a better understanding of their patients and toinform clinical decision making. This is the case for multiple sclerosis (MS), which typically affects multiple functional domains andcauses significant disability and impact on health-related quality of life (2,3).

The use of PRO has also occurred in MS clinical research (including randomized controlled trials) in recent years, but it has not sofar transpired in the routine care of MS patients (2). PROs are all-relevant endpoints for MS rehabilitation, as the ultimate goal ofrehabilitation interventions is to improve MS symptoms, and to enhance patient functional independence and societal integration.Although PROs should be included as primary endpoints in trials on rehabilitation interventions, they are predominantly employedas secondary endpoints designed to provide “added value” data to support key biomedical outcomes (4). Moreover, the reporting ofPRO findings in MS trial publication is often far from adequate (5).

To promote the adoption of PRO inventories so that health services and health interventions are evaluated from the perspective ofthe MS patient, it is also essential that such inventories are of enough quality. Greater emphasis is now placed on disease-specificinstruments that are:

(a) developed with direct input from people with MS (to assure content validity);

(b) documented according not only to classical psychometric approaches, but to item response theory (Rasch modelling);

(c) sensitive to change; and

(d) adapted for use across different languages and cultures (6,7).

New mode of administration of traditional paper-based PRO inventories, and use of technologies that facilitate scoring and retrievalare also crucial (8).

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Alessandra SolariFoundation Neurological Institute C. Besta, Milan – ItalyRIMS Rehabilitation in Multiple Sclerosis - European Network for Best Practice and Research

References:1. Doward LC, Gnanasakthy A, Baker MG: Patient reported outcomes: looking beyond the label claim. Health and Quality of Life Outcomes 2010; 8:892. Solari A. Role of health-related quality of life measures in the routine care of people with multiple sclerosis. Health Qual Life Outcomes 2005; 3:163. Rothwell PM, McDowell Z, Wong CK, Dorman PJ. Doctors and patients don't agree: cross sectional study of patients' and doctors' perceptions and assessmentsof disability in multiple sclerosis. BMJ 1997; 314:1580

4. Kuspinar A, Rodriguez AM, Mayo NE. The effects of clinical interventions on health-related quality of life in multiple sclerosis: a meta-analysis. Mult Scler J2012. DOI: 10.1177/1352458512445201

5. Solari A. Quality of life reporting in multiple sclerosis clinical trials: enough quality? Mult Scler J 2012. Editorial (in press)6. Pallant JF, Tennant A: An introduction to the Rasch measurement model: An example using the Hospital Anxiety and Depression Scale (HADS). Br J Clin Psychol2007; 46:1-18.

7. Wild D, Grove A, Martin M, et al. Principles of good practice for the translation and cultural adaptation process for patient reported outcomes (PRO) measures:report of the ISPOR task force for translation and cultural adaptation. Value Health 2005; 8:94-104

8. Fritz F, Ständer S, Breil B, et al. CIS-based registration of quality of life in a single source approach. BMC Medical Informatics and Decision Making 2011; 11:26

L8 - Psychosomatic medicine / Social factors

The diagnosis of a neurological disease is always a heavy burden and emotional distress for persons affected and their relatives.There are different ways of coping with the impairment and the subsequent problems, disadvantageous ones and more favourableones. The knowledge and training of coping strategies may sooth some of the difficulties persons with MS suffer from.

The presentation illuminates interactions between physical alterations and mental state on an organic as well as on a psychologicalbasis. Certain physical and mental limitations caused by illness interfering especially with social life are highlighted, such as bladderdysfunction, change in body language, impaired cognitive ability and affective disorders. Depression and anxiety are common inpersons with MS. Possible causes, symptoms and therapeutic options are explained. Emphasis is placed on favourable copingstrategies illustrated with the help of some examples.

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Verena KesselringDepartment of Neurorehabilitation, Valens Clinic Rehabilitation CenterValens, Switzerland

CC4 - Water therapy

Aquatic therapy is often recommended for patients with neuro-motor difficulties in addition to land treatment. There are someadvantages, which rise from the hydrophysical properties, which you have to use in the therapy. When people are immersed in a poolit shows an effect on cardio-vascular-, breath- and nervous-system. Buoyancy, hydrostatic pressure, viscosity, turbulences, wavesand temperature are, especially for severe physical handicapped people, therapeutic supporting elements. Well educated physio-and occupation therapists know how to use this forces in a treatment session. One of the most important advantages in comparisonto treatment on dry land is that people can’t fall in the pool. Because of the slow movement in the water patients have more time tothink about movement and reaction strategies. This is very helpful for patients with balance problems. Buoyancy helps to activateweak muscle chains in functional activities. Many patients are able to walk in chest deep water without help, so they can improvetheir postural control. The immersion effect on the cardiatic output is for sedentary patients like a low level cardio-vascular training.Therapy in a pool with temperature between 28 and 32°C helps to influence the thermo-sensitivity in a positive way. There are norules about water temperature that should be used with patient with multiple sclerosis. The evidence for water therapy in multiplesclerosis is very low. Only a few number of papers with low quality research are available.

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Urs N. GamperDepartment of Therapy, Valens Clinic Rehabilitation CenterValens, Switzerland

CC5 - Sport therapy

BackgroundDuring recent years it has become clear that persons with multiple sclerosis (PwMS) benefit from from physical exercise. Theinfluences of exercising on immunological functions, fatigue and cardiorespiratory values are still controversially discussed. Howeversince the last 15 years exercise therapy has become an important aspect of standardized rehabilitation in PwMS. Physical exercisesperformed within these programs are often practised on bicycle ergometers, as progressive resistance training or combined exercisetherapy.

ObjectivesThis talk addressess the following issues: (a) The role of sports therapy during multidisciplinary rehabilitaion with PwMS;

(b) Discusses the importance of standardized resistance and endurance training during rehabilitation in PwMS;

(c) Identifies the main triggers of quantifing exercise intensities during rehabilitation.

MethodsPresentation of the therapy approaches regarding MS-specific endurance and progressive resistance.performed in theRehabilitation Center Valens. Case presentations that highlight the area of sports therapy in clinical practice with PwMS.

ConclusionManagement of the training procedures regarding an adequate exercise programme with PwMS during a rehabilitative stay.

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Jens BansiDepartment of Therapy, Valens Clinic Rehabilitation CenterValens, Switzerland

References:1 - Chappel SC, Howles C 1991 Reevaluation of the roles of luteinizing hormone and follicle-stimulating hormone in the ovulatory process. Human Reproduction6 1206-1212.

2 - Filicori M, Cognigni GE, Pocognoli P et al. 2003 Current concepts and novel applications of LH activity in ovarian stimulation. Trends in Endocrinology andMetabolism 14, 267-273.

L9 - Fatigue

Limitations in activities of daily living are important to individual’s lives, and the progressive nature of MS can have significant impacton patients’ quality of life. Monitoring low-level limitations of activities during the early stages of MS should be encouraged, as it canindicate advancing neurological damage. Clinical data and survey evidence from numerous research groups suggest that impairedmobility is a large contributory factor to diminished QoL. Although these studies have demonstrated the negative effect of reducedmobility, there remains a substantial need for greater recognition of the presence and effects of disabilities including reducedmobility, fatigue, pain, depression and spasticity, and the need for targeted treatments for specific impairments. In this review,literature describing the impact on patient’s lives is presented; because of the variability in speed of progression and prognosis withearly mobility loss, the need for early, continuous and consistent assessment is suggested.

Walking ability is a key component of validated test procedures to assess mobility impairment in MS. The methods used to assesswalking ability vary widely between treatment centres, and the accuracy of the methods used and numbers of parametersdetermined to analyse specific aspects of walking and gait are often limited. The questionnaire and task-based methods used toassess walking in MS can be divided into different categories. Firstly, there are the general purpose tests such as the ExpandedDisability Status Scale (EDSS), Multiple Sclerosis Functional Composite, the Family Assessment of MS Trial Outcome Index and theShort Form-36. These, particularly EDSS, are widely used in MS to assess limitations of all activities and social participation butwalking is only a part. Others, such as SF-36, assess health-related quality of life. Secondly, there are methods designed tospecifically assess walking or gait including the timed 25 foot walk, the Dynamic Gait Index, the 12-item MS Walking Scale and theTimed Up and Go Test. These test methods require minimal equipment to perform such as a stopwatch, a hallway or a chair, andcan be completed at a medical centre within a few minutes. Most of these tests provide reliable and valid data but some lack accurateassessment of gait and some require clinician training. Thirdly, there are tests that specifically measure balance, such as the BergBalance Test in which the patient completes a series of balance exercises whilst being observed. A more recent development is theuse of accelerometers to monitor MS patients over extended periods; these can provide more accurate data than patient self-reporttools. In future, it is likely that more specific tests of walking ability will be more widely used as a key part of MS diagnosis and tomore precisely monitor disease progression and assess patient needs.

Keywords: Multiple sclerosis, walking ability, mobility, activity and social participation, determination of walking ability

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Jürg KesselringDepartment of Neurorehabilitation, Valens Clinic Rehabilitation CenterValens, Switzerland

References:- Jürg Kesselring. Disease progression in multiple sclerosis.- I. Impaired mobility and limitations of activities and participation. European Neurological Review 2010; 5: 56-60- II. Methods for the determination of walking and its impact on activities and social participation. European Neurological Review 2010; 5: 61-68

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