FINAL PROGRAMME AND ABSTRACT BOOK

Preceptorship on rehabilitation in multiple sclerosis19-21 September 2013 - Valens, Switzerland

General information

VenueThis live educational course takes place at the:

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

LanguageThe official language of this live educational course is English.

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

Project Managers: Alessia Addessi and Simona GaudiosiT +39-(0)6-420 413 591 - F +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

Organising secretariatMeridiano Congress InternationalVia Sapri, 6 - 00185 Rome, ItalyCongress Coordinator: David H. SlangenT +39 (0)6 88 595 250 - F +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 live educational course on:

Preceptorship on rehabilitation in multiple sclerosis19-21 September 2013, Valens, Switzerland

Aim of the live educational courseRehabilitation is an important component of multiple sclerosis (MS) management. Even though the therapeutic armamentarium iscontinually growing, MS still represents one of the most disabling neurological disorders and it demands a multidisciplinaryapproach. In this context, rehabilitation plays a fundamental role in ameliorating patients quality of life by improving theirindependence in daily life and limiting disability during the entire course of the disease. The preceptorship on rehabilitation will takeadvantage of the experience and facilities of the worldwide reference center in rehabilitation, led by Prof. Kesselring in Valens,Switzerland, to improve participants' knowledge of rehabilitation programmes for MS patients.

Learning objectivesBy attending this live educational course the learners will be able to:• List the main conditions that require a specific rehabilitative programme• Measure patient disabilities and identify their needs in the daily practice• Plan the most appropriate rehabilitative approach tailored on patient needs • Estimate improvements at the end of the rehabilitative programme and define long-term monitoring applying ad hoc disabilityscales

Target audienceNeurologists 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 live educational “Preceptorship on rehabilitation in multiple sclerosis” held on 19-21 September 2013 in Valens,Switzerland, is designated for a maximum of 12 (twelve) hours of European CME credits (ECMEC). Each medical specialist shouldclaim only those credits that he/she actually spent in the educational activity. EACCME® credits are recognized by the AmericanMedical Association towards the Physician's Recognition Award (PRA). To convert EACCME® credit to AMA PRA category 1 credit,please contact the AMA.

Serono Symposia International Foundation (SSIF) adheres to the principles of the Good CME Practice Group (gCMEp)

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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 educational grants received from: Arseus Medical, Besins Healthcare, Bristol-Myers Squibb, Celgene, Centre d’Esclerosi Multiple de Catalunya (Vall d’HebronUniversity Hospital), Centre Hépato-Biliaire (Hôpital Paul Brousse), Croissance Conseil, Cryo-Save, Datanalysis, Dos33, Esaote, Ferring, Fondazione Humanitas,Fundación IVI, GE Healthcare, GlaxoSmithKline Pharmaceuticals, IPSEN, International Society for Fertility Preservation, Johnson & Johnson Medical, 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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We value your opinion!

We are continually trying to develop and improve our educational initiative to provide you with cutting-edge learning activities.

During this live educational course you will be asked to answer a survey and after three months you will be receiving an onlinesurvey to help us to better tailor our future educational initiatives.

We thank you for participating!

Scientific organiser

Jürg KesselringDepartment of NeurorehabilitationValens Clinic Rehabilitation CenterValens, Switzerland

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

This live educational course is endorsed by RIMS(Rehabilitation In Multiple Sclerosis).

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List of faculty members

Sylvan AlbertDepartment of NeurorehabilitationValens Clinic Rehabilitation CenterValens, Switzerland

Rixt AlthofDepartment of TherapyValens Clinic Rehabilitation CenterValens, Switzerland

Bernd AnderseckDepartment of TherapyValens Clinic Rehabilitation CenterValens, Switzerland

Jens BansiDepartment of TherapyValens Clinic Rehabilitation CenterValens, Switzerland

Serafin BeerDepartment of Neurology and NeurorehabilitationValens Clinic Rehabilitation CenterValens, Switzerland

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

Peter FeysHasselt UniversityBiomedical Research Institute (BIOMED)Bruxelles, Belgium

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

Emilio PortaccioDepartment of NEUROFARBAUniversity of FlorenceFlorence, Italy

Alessandra SolariUnit of NeuroepidemiologyFoundation IRCCS Neurological Institute C. BestaMilan, Italy

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Scientific programme19-21 September 2013

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Thursday, 19 September 2013

13.00 Welcome lunch and registration

14.00 Serono Symposia International Foundation (SSIF)openingG. Comi, SSIF Scientific Committee President

14.15 Opening and introduction to the MS RehabilitationCenter of ValensS. Albert (Switzerland)

14.30 L1: Biological basis of neuro-rehabilitationG. Comi (Italy)

15.00 L2: Dysphagia / Speech therapist S. Albert (Switzerland)

15.30 Visit of the Clinic

16.15 CR1: Patient demonstrationB. Anderseck and L. Hamilton (Switzerland)

17.30 Discussion

18.00 End of the day

Session I

Friday, 20 September 2013

09.00 L3: Overview on neurorehabilitation, appliedneuroplasticityJ. Kesselring (Switzerland)

09.30 L4: Technical aids / AssessmentsB. Anderseck (Switzerland)

10.00 L5: Psychosomatic medicine / Social factorsV. Kesselring (Switzerland)

10.30 L6: Medical treatment / SpasticityS. Beer (Switzerland)

11.00 Coffee break

11.20 L7: Bladder problemsR. Althof (Switzerland)

11.50 L8: ICF-Core setsK. Luyckx (Switzerland)

12.20 L9: Walking assessmentP. Feys (Belgium)

12.50 Working lunch

13.50 L10: Cognitive rehabilitation:Assessment D. Langdon (UK)Intervention E. Portaccio (Italy)

14.50 L11: Patient reported outcomes and shareddecision in rehabilitationA. Solari (Italy)

15.20 Coffee break

15.40 CC1: Clinical cases - open discussionJ. Kesselring (Switzerland)

16.25 CR2: Shared decision in rehabilitationValens team

17.10 End of the day

Session II

Legend: L : Lecture; CC : Clinical Cases; CR: Case Report

Saturday, 21 September 2013

09.00 L12: FatigueJ. Kesselring (Switzerland)

10.15 CR3: Water therapyU.N. Gamper (Switzerland)

11.00 Coffee break

11.20 CC2: Sport therapyJ. Bansi (Switzerland)

12.05 Closing session / Next stepsU.N. Gamper (Switzerland)

12.40 End of the live educational course

Working lunch

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)and declared to be member of a company advisory board, board of directors or other similar group ofSwiss Advisory Board Fingolimod (Novartis).

Giancarlo Comi Declared receipt of honoraria or consultation fees from Serono Symposia International Foundation, MerckSerono, Novartis, Teva, Bayer, Biogen, Genzyme, Sanofi, Almirall, Actleion.

Peter Feys Declared receipt of grants and contracts from Novartis via Rims. Declared receipt of honoraria orconsultation fees from Biogen (advisory board). Declared to be member of company advisory board, boardof directors or other similar group: President of Rims.

Urs N. Gamper Declared no potential conflict of interest.

Louise Hamilton Declared no potential conflict of interest.

Jürg Kesselring Declared to be member of a company advisory board, board of directors or other similar group ofNovartis, data safety monitoring board Fingolimod.

Verena Kesselring Declared no potential conflict of interest.

Kurt Luyckx Declared no potential conflict of interest.

Emilio Portaccio Declared receipt of grants and contract from Merck Serono. Declared receipt of honoraria or consultationfees from Merck Serono, Biogen Idec, Genzyme. Declared to be member of company advisory board,board of directors or other similar group: Merck Serono and Biogen Idec.

Alessandra Solari Declared receipt of honoraria or consultation fees from Genzyme.

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 05 September 2013.

Dawn Langdon

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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. Dysphagia / Speech therapist

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 Center, Valens, Switzerland

CR1. Patient demonstration

The Role of Occupational therapy in MSOften the OT has a role in the later stages of the MS, EDSS 5→ 6, here when Energy, Fatigue etc. are important issues. Often the OTcovers important, but perhaps less obvious issues with the MS patient. For example many patients go to Rehab with the goal of“improving walking“or “building up strength“When the OT engages the person in the therapeutic process, we discover who that person is, what their life roles and routines areand how their environment impacts on their daily activities; this is when we start to build an overall picture of the persons level of“occupational performance & their daily demands“

Resource ManagementIt is often the case that their daily routine or their many roles (as a mother, wife, worker, carer, and house keeper) has a huge impactupon their state of wellbeing, which is often overlooked (as this is something that they have always done). It can often be that as theMS progresses coping with all of these „roles or routines „ becomes increasingly difficult, usually due to worsening symptoms suchas Fatigue, reduced mobility, limited strength etc.

Resource Management is an important topic of discussion with MS patients; here the OT and patient begin analysing a typical weekor typical routines at home; this can be achieved through a weekly or daily plan, or simply through discussing what a typical weekin the patient’s life entails. It is often unfamiliar (or it comes as a surprise) to the patient how much he/she does in a day, or sometimes how often he/she isunder stress due to their intense schedule or routines.We humans tend to be “creatures of habit“ and take comfort in knowing what the day entails, and therefore a change of routine,giving up or sharing certain roles or activities, can be for some people understandably difficult. MS patients are not always easy to manage, they have a progressive disease, and although there may be a time where helping aidsor assistance may be necessary; it is understandably difficult to accept help or do give up certain roles or activities. As the MS progresses the patient can sometimes be seen to be inflexible in their ways of thinking, this is often seen as stubbornnessto change, but can often be due to cognitive weaknesses or fear of change. This is why it is paramount that the patient has a guideor problem solver to guide them through the adaptations or small changes necessary to improve or maintain independence. Forexample the OT will advise on certain strategies like planning ahead in order to manage fatigue symptoms, or changing routines inorder to spare energy, or using new aids and adaptations.

Activities of Daily Living (ADL) ManagementOccupational Therapy recognises that the individual needs to maintain fulfilling roles and activities in order to have a certain level ofproductivity. Instruments such as the Canadian Occupational Performance Measure (COPM) can be used to prioritise importantfrom less important roles the individual fulfils on a daily basis.Using the COPM as a basis allows a comparison as to „What needs to be done“and „what I value doing or what I think only I can do“It allows the „important“ roles to be addressed, for example the role of mother or homemaker has copious activities: A valued activitywithin this role could be „bringing the kids to school“, or „making dinner for the family“, in the same role perhaps a less importantbut nonetheless necessary activity could be „hovering“ or „taking out the rubbish“ – here these things still need doing, it is thus ourjob to help the patient either share more responsibility or allow for a better routine and use of resources in order to achieveproductivity and save energy where possible.

Strategies include better management of time:1. Get organised and ensure you share the workload throughout the week2. Find practical solutions together: ironing using Perching stool or sitting. 3. Hang clothes up at waist height then adjust the Clothes Line4. Shop differently: ask the Butcher, Grocer to already prepare / chop meat / veg.5. Adaptions: Electrical Tin opener, use of Kitchen mixer to chop vegetables6. Helping Aids: practical tips7. Discuss problems → Find practical solutions together

Tips for Energy management or using Helping Aids:– Try it out in everyday situations– Reanalyse what is good / what is not so effective – Reorganise daily life – Ask for help when needed!

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Bernd Anderseck and Louise HamiltonDepartment of Therapy, Valens Clinic Rehabilitation Center, Valens, Switzerland

L3. 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

L4. 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

L5. 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 to cope 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

L6. 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 in the long-term. Therefore symptomatic treatmentand rehabilitation remains an important treatment option for MS patients.

Spastic syndromes are very common in multiple sclerosis (MS) affecting up to 50% of MS patients. Before starting treatment itshould be noted that spasticity may also have a positive impact in some patients (i.e. compensation of weakness of lower limbsallowing standing and walking). Therefore, detailed evaluation of spasticity is important assessing pattern of spasticity, impact ondaily life, secondary problems, and potentially triggering 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 islimited by adverse effects and the risk of deteriorating weakness. In selected MS patients with spasticity of the lower limbs notresponding to other antispastic treatments, intrathecal baclofen (ITB) therapy may be a good alternative. ITB has been shown to beeffective in reducing spasticity, spasms and pain, improving motor functions and quality of life. The first step evaluating ITB isassessing clinical benefit after a single intrathecal test injection. In patients responding well to this test dose, ITB pump isimplantated with gradually adaptation of intrathecal dose in the early phase to find the optimal adjustment. In the long-term MSpatients with ITB should be followed closely at a specialized center for pump refill and monitoring of possible treatment problems.It is important to note, that up to 45% may experience complications (i.e. dislocation or disconnection of implanted catheter, pumpdysfunction, overdose, withdrawal, infections). In general, however, ITB is well tolerated, and patients satisfaction is high. In MSpatients with focal spasticity, especially of the lower limbs, botulinum toxin may be beneficial. Some patients with treatment resistantspasticity might respond to cannabinoids. Its use, however, is limited due to some concerns about possible adverse effects oncognition, and due to legal aspects.

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Serafin BeerDepartment of Neurology and Neurorehabilitation, Valens Clinic Rehabilitation CenterValens, Switzerland

L7. Bladder problems

Bladder Dysfunction is common in MS, affecting 80% – 100% of patients during the course of the disease and has a severe effect onthe patients’ quality of life. Bowel Dysfunction occurs with up to 40%.

Bladder Dysfunction Symptoms are urgency, frequency, incontinence, nocturia, hesitancy, postvoidal residue. Bowel DysfunctionSymptoms are constipation and faecal incontinence.

Both Bladder and Bowel Dysfunction have effect on fatigue, gait control, spasticity, pain, depression and sexual activity.

The therapeutic interventions are most effective with a multidisciplinary approach and should be offered by special educated healthprofessionals. Patient education and simple and helpful interventions are to be individual and close monitored with the possibilitythat symptoms will recur or develop de novo.

Possible physiotherapeutic interventions are:

• Pacing of micturiction and fluid intake

• Pelvic floor muscle training

• Relaxation and breathing techniques

• Mobility and manual dexterity training

• Biofeedback and or electrical stimulation

• Advice on absorbent incontinence pads and urinals

• Clean Intermittent Self Catherisation (CISC)

• Trans Anal Irrigation

The symptoms of most patients with OAB (Over Active Bladder) can be managed conservatively. Medical management in the formof anticholinergic therapy is effective. Intravesical administration of capsaicin or botulinumtoxin may be beneficial when first-linetreatment is ineffective.

The overall goal is to maintain the patients’ dignity and self esteem and so optimise the quality of life.

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Rixt AlthofDepartment of Therapy, Valens Clinic Rehabilitation CenterValens, Switzerland

L8. ICF-Core sets

Multiple sclerosis (MS) is one of the most common 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 PwMS 7.

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 - 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

L9. Walking assessment

Gait is perceived by persons with MS as one of the most valuable bodily functions, with impairment being highly prevalent already atearly disease stages 1. The most commonly applied measure for gait function is the timed 25 foot test (T25FWT) as part of the MSfunctional composite score. Thresholds for variability and clinical meaningful change have typically been accepted as approximately20%.

However, also longer walking capacity tests are standard available such as the 100m walk and 6-minute walking test (6MWT) 2. Thepotential advantage of longer walking tests is that it may encompass endurance and muscle strength, and allow for calculation ofmotor fatigue indexes or investigation of the pacing pattern 3. However, demonstrated advantages of longer walking tests are alsoan more accurate prediction of habitual community walking, especially in more disabled patients with EDSS>44. As well, the 6MWTshows considerably less within-day variability than the T25FW while being more responsive to rehabilitation programs (Feys/Baertet al., in revision). Differences depending disability levels were however found. The 2MWT appears an alternative for the 6MWT onabove-mentioned characteristics when aiming to measure walking capacity, although maximal heart rate and oxygen consumptionlevels may not yet been reached5-7. Finally, whatever test being applied, the walking capacity is not related to increasing fatigue levelsduring time of day.(8) Future research should focus on walking capacity tests also encompassing cognitive resources, as well on theinvestigation of psychometric properties of the MSWS-12.

Exercise therapy is increasingly being accepted as an effective intervention for patients with lower EDSS levels, and was shown topositively impact on walking measures 9. Recent data from a large RIMS-supported trial including multiple European rehabilitationinterventions confirm a 10% increase in walking speed across different disability levels except of EDSS >6 (Baert et al., in revision).The responsiveness to rehabilitation was greatest for 2/6MWTand MSWS-12 but differences were found depending on disabilitylevels.

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Peter FeysHasselt University, Biomedical Research Institute (BIOMED), Bruxelles, Belgium

References:1 - Kalron A, Achiron A, Dvir Z. Muscular and gait abnormalities in persons with early onset multiple sclerosis. J Neurol Phys Ther 2011 Dec;35(4):164-9.2 - Kieseier BC, Pozzilli C. Assessing walking disability in multiple sclerosis. Mult Scler 2012 Jul;18(7):914-24.3 - Phan-Ba R, Calay P, Grodent P, Delrue G, Lommers E, Delvaux V, et al. Motor fatigue measurement by distance-induced slow down of walking speed in multiple

sclerosis. PLoS One 2012;7(4):e34744.4 - Gijbels D, Alders G, Van HE, Charlier C, Roelants M, Broekmans T, et al. Predicting habitual walking performance in multiple sclerosis: relevance of capacity

and self-report measures. Mult Scler 2010 May;16(5):618-26.5 - Gijbels D, Dalgas U, Romberg A, de G, V, Bethoux F, Vaney C, et al. Which walking capacity tests to use in multiple sclerosis? A multicentre study providing the

basis for a core set. Mult Scler 2012 Mar;18(3):364-71.6 - Motl RW, Suh Y, Balantrapu S, Sandroff BM, Sosnoff JJ, Pula J, et al. Evidence for the different physiological significance of the 6- and 2-minute walk tests in

multiple sclerosis. BMC Neurol 2012;12:6.7 - Dalgas U, Kjølhede, T., Gijbels D, Romberg A, Santoyo C, et al. Effects of time of day, fatigue and disability on aerobic intensity and pacing strategy during the

six minute walk test in persons with MS: a multi-center trial. Journal Rehabilitation Medicine 2013.8 - Feys P, Gijbels D, Romberg A, Santoyo C, Gebara B, de Noordhout BM, et al. Effect of time of day on walking capacity and self-reported fatigue in persons with

multiple sclerosis: a multi-center trial. Mult Scler 2012 Mar;18(3):351-7.9 - Snook EM, Motl RW. Effect of exercise training on walking mobility in multiple sclerosis: a meta-analysis. Neurorehabil Neural Repair 2009 Feb;23(2):108-16.

L10. Cognitive rehabilitation

1 - Department of Psychology, Royal Holloway university of London, London, UK2 - Department of NEUROFARBA, University of Florence, Florence, Italy

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 Reproduction

6 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.

InterventionEmilio Portaccio

More than half of all patients with multiple sclerosis (MS) experience cognitive impairment, most commonly with involvement ofcomplex attention, information processing speed, learning and memory, executive functioning. Cognitive dysfunction is a leadingcause of disability in MS and it can have profound social and economic consequences for patients and their families. Research ontreatment for cognitive impairment in MS is still in the early stages, as it is for most neurological conditions. The available disease-modifying therapies in MS may provide some modest benefit to cognition, but patients with MS clearly need better treatment forcognitive dysfunction. A number of studies have assessed symptomatic treatments of cognition in MS, and the results of these small,underpowered studies have been mixed. Studies on cognitive rehabilitation have also preliminarily shown the possibility to improvecognitive functioning due to brain plasticity and compensation. Individual studies based on retraining of attention and improvementof learning strategies suggest positive results. Moreover, studies using functional MRI techniques have provided some promisingresults and cues to future research in this area. On the whole, the field of rehabilitative treatment of cognitive impairment in MS isstill in its infancy, and the evidence base to drive interventions is limited. Much more needs to be done in this area if we are to makea real difference to the impact on our patient population.

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Dawn Langdon, UK 1

Emilio Portaccio, Italy 2

L11. Patient reported outcomes and shared decision inrehabilitation

Over the last 20 years two paradigm shifts have occurred in health care. One relates to the assessment and monitoring of patienthealth status: in addition to conventional clinical endpoints, patient-reported outcomes (PROs) have gained importance in bothclinical research and routine care (1). By providing information from a unique perspective, the use of health-related quality of life andother PRO data enables clinicians to obtain a better understanding of their patients and to inform clinical decision making. This isthe case for multiple sclerosis (MS), which typically affects various functional domains and causes significant disability and impacton health-related quality of life (2,3). PROs are all-relevant endpoints for MS rehabilitation, as the ultimate goal of rehabilitationinterventions is to improve MS symptoms, and to enhance patient functional independence and societal integration (4). The use ofPRO in the MS field has improved over recent years (5,6), but it has not so far transpired in routine care (2).

The other change relates to the patient-provider relation, where the paternalistic model is giving way to the shared decision making(SDM) model. SDM is a process by which patients and providers consider outcome probabilities and patient preferences and reacha health care decision based on mutual agreement (7). The implementation of SDM is important in rehabilitation, starting from itscore component, goal setting. It is a process of exchange and negotiation between the patient and rehabilitation team, in which keypatient priorities are identified and the performance level to be attained for defined activities within a specified time frame agreedon. Implementation of SDM in goal setting is thought to enhance patient autonomy and interdisciplinary teamwork (8-10). However,the paradigm shift from discipline-centred to patient-centred treatment requires training of the health team in SDM skills, adequatestructures, processes and time, which can be at challenge in both clinical practice (11, 12) and rehabilitation (10).

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

References:01. Doward LC, Gnanasakthy A, Baker MG: Patient reported outcomes: looking beyond the label claim. Health and Quality of Life Outcomes 2010; 8:8902. 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: 1603. Rothwell PM, McDowell Z, Wong CK, Dorman PJ. Doctors and patients don't agree: cross sectional study of patients' and doctors' perceptions and assessments

of disability in multiple sclerosis. BMJ 1997;314:158004. Beer S, Khan F, Kesselring J. Rehabilitation interventions in multiple sclerosis: an overview. J Neurol 2012; 259: 1994–200805. 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 J

2012. DOI: 10.1177/1352458512445201 06. Solari A. Quality of life reporting in multiple sclerosis clinical trials: enough quality? Multiple Scler J 2012; 18(12): 1668–166907. Frosch DL, Kaplan RM. Shared decision making in clinical medicine: past research and future directions. Am J Prev Med 1999; 17(4): 285–294 08. Holliday RC, Cano S, Freeman JA, Playford ED. Should patients participate in clinical decision making? An optimised balance block design controlled study of

goal setting in a rehabilitation unit. JNNP 2007; 78(6): 576-59009. Schut HA, Stam H J. Goals in rehabilitation teamwork. Disabil Rehab 1994; 16(4): 223-22610. Koerner M, Wirtz M, Michaelis M, Ehrhardt H, et al. A multicentre cluster-randomized controlled study to evaluate a train-the-trainer programme for

implementing internal and external participation in medical rehabilitation. Clin Rehabil published online 15 July 2013. DOI: 10.1177/0269215513494874 11. Légaré F, Ratté S, Gravel K and Graham ID. Barriers and facilitators to implementing shared decision-making in clini¬cal practice: Update of a systematic

review of health profes¬sions’ perception. Patient Educ Couns 2008; 73: 526–53512. Pietrolongo E, Giordano A, Kleinefeld M, Confalonieri P, et al. Decision-making in multiple sclerosis consultations in Italy: Third observer and patient

assessments. PLoS ONE 2013; 8(4): e60721. DOI:10.1371/journal.pone.0060721

L12. 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 Center, Valens, 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

CR3. 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 immerse in a pool itshows an effect on cardio-vascular-, breath- and nervous-system. Buoyancy, hydrostatic pressure, viscosity, turbulences, waves andtemperature are, especially for severe physical handicapped people, therapy supporting elements. Well educated physio- andoccupation therapists know how to use this forces in a treatment session. One of the most important advantages in comparison totreatment 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 for 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 what 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 of research are available.

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

CC2. Sport therapy

ObjectivesDuring recent years it has become clear that persons with multiple sclerosis (PwMS) benefit from physical exercise. The influencesof exercising on immunological functions, fatigue and cardiorespiratory values are still controversially discussed. However since thelast 15 years exercise therapy has become an important aspect of standardized rehabilitation in PwMS. Physical exercises performedwithin these programs are often practiced on bicycle ergometers, as progressive resistance training or combined exercise therapy.

MethodsThis talk addresses the following issues: A. The role of sports therapy during multidisciplinary rehabilitation with PwMS; B. Discusses the importance of standardized endurance and resistance training during rehabilitation in PwMS; C. Identifies the main triggers to quantify exercise intensities during rehabilitation.

ResultsPractical experiences of the Rehabilitation Center Valens concerning MS-specific endurance and progressive resistance training arepresented. Case presentations highlight the area of sports therapy in clinical practice with MS.

ConclusionsManagement of the training procedures (quantification of exercise intensities) regarding an adequate exercise programme withPwMS during a rehabilitative stay.

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Jens BansiDepartment of Therapy, Valens Clinic Rehabilitation CenterValens, Switzerland

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