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FINAL PROGRAMME AND ABSTRACT BOOK
14thMS Nurse international workshopLyon, France - 9 October 2012
General information
VenueThe conference takes place at the:
HOTEL NH LYON AÉROPORTBP 202. 69125 Lyon-Saint Exupéry Aéroport. Lyon, Francehttp://www.nh-hotels.it/nh/it/hotels/francia/lione/nh-lyon-aeroport.html
LanguageThe official language of this Course will be English.
Scientific secretariatSerono Symposia International FoundationSalita di San Nicola da Tolentino, 1/b00187 Rome, Italy
Project Manager: Serena Dell’AricciaTel.: +39 (0)6 420 413 251Fax: +39 (0)6 420 413 677E-mail: [email protected]
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: Debora UrbinelliTel.: +39 (0)6 88 595 232Fax: +39 (0)6 88595 234E-mail: [email protected]
To know more visit: www.neurology.seronosymposia.org
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14th MS Nurse international workshop
Serono Symposia International Foundation workshop on:
14th MS Nurse international workshopLyon, France - 9 October 2012
Aim of the workshopThis is an educational program created to encourage the dissemination of scientific knowledge among nurses working in the fieldof multiple sclerosis (MS). Disease management in research and clinical practice, with a special emphasis on the nurses’ crucialrole, will be reviewed. Management of main signs and symptoms of the disease, such as spasticity, pain, psychosocial distress,cognitive impairment and genitourinary problems will be addressed both from the physician and nurse perspective.
Learning objectivesThis workshop will offer to participants:• Updates on etiologic factors and pathogenetic mechanisms• An overview of diagnostic tools used in patient screening and follow-up• A review of research methodology in MS• Criteria to optimize treatment administration
Target audienceNurses involved in the treatment of persons with multiple sclerosis.
AccreditationSerono Symposia International Foundation (www.seronosymposia.org) has submitted this programme "14th MS Nurseinternational workshop" (Lyon, France) for accreditation by the International council of Nurses (ICN).
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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, Besins Healthcare, Celgene, Centre d’Esclerosi Multiple de Catalunya (Vall d'HebronUniversity Hospital), ComtecMed, Congrex, Croissance Conseil, Cryo-Save, Datanalysis, Dos33, Esaote, European Society of Endocrinology, Ferring, FondazioneHumanitas, Fundación IVI, GE Healthcare, GlaxoSmithKline Pharmaceuticals, IPSEN, 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 Catholique de 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 this programme.
We also kindly ask you to assess the programme 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 programmes.
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 organizersGiancarlo Comi Department of NeurologyInstitute of Experimental NeurologyVita-Salute San Raffaele UniversityMilan, Italy
Workshop moderatorsEija Luoto Masku Neurological Rehabilitation CentreMasku, Finland(Past President RIMS - Rehabiliation in MS -European network of MS Centres)
Amy Perrin RossDepartment of NeurosciencesLoyola University Medical CenterOak Brook, Illinois, USA(Past President of IOMSN -International Organization of MS Nurses)
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MS nurse workshop steering committeeSharalyn AndersonDepartment of NeurologyNorth East Lincolnshire Care Trust Plus Grimsby, UK
Dawn CarleDepartment of NeurologyOttawa HospitalGeneral CampusOttawa, Ontario, Canada
Giancarlo Comi Department of Neurology Institute of Experimental Neurology Vita-Salute San Raffaele UniversityMilan, Italy
Sara DishonThe MS Centre Carmel Medical Centre Haifa, Israel
Mark S. FreedmanThe Ottawa HospitalMS Research Unit Ottawa, Ontario, Canada
Barbara KieserNeurologische Klinik KantonsspitalKuttingen, Switzerland
Dawn LangdonDepartment of PsychologyRoyal Holloway University of LondonLondon, UK
Eija LuotoMasku Neurological Rehabilitation CentreMasku, Finland
Roberta MottaItalian Multiple Sclerosis Society Rehabilitation CentreGenoa, Italy
Amy Perrin RossDepartment of Neurosciences Loyola University Medical Center Oak Brook, Illinois, USA
List of speakers & chairmen
Maria Pia AmatoDepartment of Neurological and Psychiatric SciencesUniversity of FlorenceFlorence, Italy
Geraldine AndrodiasDepartment of NeurologyLyon neurological hospitalLyon, France
Dawn CarleDepartment of NeurologyOttawa HospitalGeneral CampusOttawa, Ontario, Canada
Giancarlo ComiDepartment of NeurologyInstitute of Experimental NeurologyVita-Salute San Raffaele UniversityMilan, Italy
Monica FalautanoFunctional Unit of PsychologyDepartment of Neurology and Clinical Neurophisiology,IRCCS Fondazione San Raffaele del Monte TaborMilan, Italy
Oscar FernándezNeuroscience Institute Service of NeurologyUniversity Regional Hospital “Carlos Haya”Malaga, Spain
Mark S. FreedmanThe Ottawa HospitalMS Research UnitOttawa, Ontario, Canada
Urs N. GamperDepartment of TherapyValens Clinic Rehabilitation CenterValens, Switzerland
Claudio GasperiniDepartment of Neurosciences San Camillo Forlanini Hospital, Rome, Italy
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Hüseyin HüseyinNeurology Department Luton & Dunstable NHS TrustLuton, UK
Dawn LangdonDepartment of PsychologyRoyal Holloway University of LondonLondon, UK
Diane LowdenMS ClinicMontreal Neurological HospitalMontreal, Quebec, Canada
Fred D. LublinCorinne Goldsmith Dickinson Center for MSMount Sinai School of MedicineNew York, NY, USA
Eija LuotoMasku Neurological Rehabilitation CentreMasku, Finland
Roberta MottaItalian Multiple Sclerosis SocietyRehabilitation CentreGenoa, Italy
Amy Perrin RossDepartment of Neurosciences Loyola University Medical Center Oak Brook, Illinois, USA
Jaume Sastre-GarrigaMultiple Sclerosis Center of Catalonia Unit of Clinical Neuroimmunology Vall d’Hebron University Hospital Barcelona, Spain
Scientific Program
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Session Chair: Eija Luoto, Finland
08.55 L1: Epidemiology of MSGeraldine Androdias, France
09.15 L2: MS centers organization Mark S. Freedman, Canada
09.35 L3: The role of nurse in centers managing clinicaltrialsDawn Carle, Canada
09.55 L4: Updates on disease modifying treatmentFred D. Lublin, USA
10.15 Discussion
10.40 Coffee break
Session Chair: Eija Luoto, Finland
11.00 L5: Psychological and social impact of MSdiagnosisDawn Langdon, UK
11.20 L6: Fostering adherence to DMDsJaume Sastre-Garriga, Spain
11.40 L7: Fostering adherence to DMDs - The nurse perspectiveHüseyin Hüseyin, UK
12.00 L8: The comprehensive interaction with patientsout from the hospitalClaudio Gasperini, Italy
12.20 L9: The comprehensive interaction with patientsout from the hospital - The nurse perspectiveAmy Perrin Ross, USA
12.40 Discussion
13.00 Lunch
14.00 Poster session
Improving organization and optimize treatmentSession I
Interaction with MS patientsSession II
Session Chair: Amy Perrin Ross, USA
14.20 L10: Cognitive problemsMaria Pia Amato, Italy
14.40 L11: Cognitive rehabilitationMonica Falautano, Italy
15.00 L12: Affective and emotional problemsGiancarlo Comi, Italy
15.20 L13: Management of psychological problemsDawn Langdon, UK
15.40 L14: Affective and emotional problems - The nurse perspectivesDiane Lowden, Canada
16.00 Discussion
16.10 Coffee break
Session Chair: Amy Perrin Ross, USA
16.30 L15: Motor problems and rehabilitation - The doctor perspectiveFred D. Lublin, USA
16.45 L16: Motor problems and rehabilitation - The physiotherapist perspectiveUrs N. Gamper, Switzerland
17.05 L17: Genito-Urinary problems in MS patientOscar Fernández, Spain
17.15 L18: Genito-Urinary problems in MS patient - The nurse perspectiveRoberta Motta, Italy
17.35 Discussion
17.50 End of the workshop
Motor and genito-urinary problemsSession IV
Cognitive and psychological issuesSession III
Tuesday - 9 October 2012
08.35 Serono Symposia International Foundation (SSIF) Opening and IntroductionGiancarlo Comi, SSIF Scientific Committee President
08.45 Welcome and Meeting introductionEija Luoto, Finland - Amy Perrin Ross, USA
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:
Maria Pia Amato Declared receipt of grants and contracts from: Merck Serono, Teva, Biogen, Novartis, Bayer. Declaredthe receipt of honoraria or consultation fees from: Merck Serono, Teva, Biogen, Novartis, Bayer.Declared to be a member of a company advisory board, board of directors or other similar group: MerckSerono, Teva, Biogen, Novartis, Bayer.
Geraldine Androdias Declared no potential conflict of interest.
Dawn Carle Declared receipt of honoraria or consultation fees from Serono Symposia International Foundation.
Giancarlo Comi Declared receipt of honoraria or consultation fees from: Novartis, Teva Pharmaceutical Ind. Ltds; SanofiAventis, Merck Serono, Bayer Schering, Biogen Dompè, Actelion.
Monica Falautano Declared no potential conflict of interest.
Oscar Fernández Declared no potential conflict of interest.
Hüseyin Hüseyin Declared to be a member of a company advisory board, board of directors or other similar group: MerckSerono, Teva.
Diane Lowden Declared receipt of honoraria or consultation fees from: EMD Serono; Teva Canada Innovation; Bayer;Biogen Idec; Sanofi-Aventis.
Fred D. Lublin Declared receipt of sources of funding for research from: Acorda Therapeutics Inc; Biogen Idec; NovartisPharmaceutical Corp; Teva Neuroscience Inc; Genzyme, Sanofi-Aventis; NIH; NMSS. Declared alsoconsulting agreements/advisory boards/DSMB from: Bayer Healthcare Pharmaceuticals; Biogen IdecInc; EMD Serono, Inc.; Novartis; Pfizer; Teva Neuroscience; Actelion; Sanofi-Aventis; Acorda; Questcor;Roche; Celgene; Johnson & Johnson; Revalesio; Coronado Bioscience: Genzyme, MedImmune; BrystolMyer Squibb. Declared current financial interests/stock ownership from Cognition Pharmaceuticals Inc.
Eija Luoto Declared receipt of honoraria or consultation fees from: Serono Symposia International Foundation,Syllabus Commitee, EMSP. Declared also participation in company sponsored speaker’s bureau: SeronoSymposia International Foundation.
Roberta Motta Declared receipt of honoraria or consultation fees from: Merck Serono; Teva; Novartis. Declared to bemember of a company advisory board, board of directors or other similar groups for Novartis, Teva.
Amy Perrin Ross Declared receipt of honoraria or consultation fees from: EMD Serono, Pfizer, Bayer, TEVA, Novartis,Allergan, Genzyme, Questcor, Acorda. Declared to be a member of a company advisory board, board ofdirectors or other similar group: EMD Serono, Novartis, Allergan, Genzyme, Questcor, Acorda.
Jaume Sastre-Garriga Declared receipt of honoraria and consultation fees from Roche. Declared to be member of a companyadvisory board, board of directors or other similar group: Novartis, Biogen. Declared also participation incompany sponsored speaker’s bureau: Novartis; Teva, Eisai, Serono Symposia International Foundation.
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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 28 September 2012.
Mark S. Freedman
Urs N. Gamper
Claudio Gasperini
Dawn Langdon
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Abstracts
L1 - Epidemiology of MS
Multiple sclerosis (MS) is a demyelinating immune-mediated disease of the central nervous system and the leading cause ofdisability in young people in the western countries. It is also one of the best studied neurological diseases in terms of epidemiology.
In the first part of this review, the main epidemiological characteristics of MS such as prevalence, incidence rate, female to maleratio, age at onset, course and prognosis will be presented.
In the second part, we will discuss the potential explanations for the uneven distribution of the disease across the world and thetemporal changes in incidence and sex-ratio over the last decades. Both can be attributed either to genetic or to environmentalfactors and their interaction that will be briefly presented.
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Geraldine AndrodiasDepartment of Neurology, Lyon neurological hospital, Lyon, France
L2 - MS centers organization
Abstract not in hand at the time of going to press.
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Mark S. FreedmanThe Ottawa Hospital, MS Research Unit, Ottawa, Ontario, Canada
L3 - The role of nurse in centers managing clinical trials
This presentation will define the essential roles of the nurse as a member of a multi-disciplinary team in an MS Research basedUnit and/or Centre. Nurses in Research seek different objectives but work closely to make sure clinical trials are done according toprotocol and according to Ethical and Good Clinical Practice guidelines. The nurse's role is crucial at every step of the process, fromsubmission to post-study follow up and eventual closure.
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Dawn CarleDepartment of Neurology, Ottawa Hospital, General Campus, Ottawa, Ontario, Canada
L4 - Updates on disease modifying treatment
It has been over nineteen years since the approval of the first multiple sclerosis (MS) disease modifying agent (DMA). Since then wehave developed 7 other therapies representing five different molecular mechanisms. All of our current DMAs appear to work throughthe immune system. All of these therapies have been shown to reduce the relapse rate and most have reduced the accumulation ofdisability in relapsing forms of MS. Several of the agents are approved for treatment of the clinically isolated syndrome, the firstattack of what will likely become MS. Treatment of secondary progressive MS has been more challenged and there are no therapiesthat have successfully treated primary progressive MS.
Over the past decade, we have seen a general drop in the annualized relapse rate seen in clinical trials, including in those treatedwith placebo. Despite that, the relative reduction in relapse rate seen in the treatment arms of these clinical trials has been greaterthan seen in the 1990’s.
The therapeutic pipeline for agents is quite robust with several additional oral agents and monoclonal antibodies that have reportedsuccessful phase III studies in relapsing forms of MS, including teriflunomide, laquinimod, BG-12, and alemtuzumab.
We look to the future for better therapies for the degenerative aspects of MS, which hopefully will address the needs of those withprogressive disease.
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Fred D. LublinCorinne Goldsmith Dickinson Center for MS, Mount Sinai School of Medicine, New York, NY, USA
References:1 - J Manag Care Pharm. 2010 Nov-Dec;16(9):703-12. All-cause health care utilization and costs associated with newly diagnosed multiple sclerosis in the United
States. Asche CV, Singer ME, Jhaveri M, Chung H, Miller A.2 - J Eval Clin Pract. 2008 Jun;14(3):460-4. Experiences of diagnosis and treatment among people with multiple sclerosis. Edwards RG, Barlow JH, Turner AP
L5 - Psychological and social impact of MS diagnosis
Abstract not in hand at the time of going to press.
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Dawn LangdonDepartment of Psychology, Royal Holloway University of London, London, UK
L6 - Fostering adherence to DMDs
Evidence from a large number of clinical trials has clearly demonstrated the benefit of immunomodulatory therapies in MS. It is alsoclear that the therapies available currently are not without side effects and their modes of administration can still be cumbersomefor some patients. Additionally, the first-line immunomodulatory drugs are only partially effective in some patients and negativeoutcomes such as relapses and progression of disability are still to be expected. Overall, these factors affect adherence to treatment,and poor adherence may render the therapeutic efforts futile. Most studies focusing on adherence have used as an outcome thenumber of patients who stop therapy with a given drug; others have investigated the number of missing doses. Several studies usingthe first approach have shown that most drop-outs occur in the early phases of therapy; in this regard, management of side effectsof therapies, which is most important at therapy onset, is crucial, as it is responsible for almost half of all discontinuations. The side-effects profiles of interferon (IFN) beta preparations and glatiramer acetate are not identical. In the case of IFN beta preparations, itis especially important to manage flu-like symptoms at onset of therapy. Several strategies can be implemented to diminish patientdiscomfort, such as gradual dose increase and concomitant use of non-steroidal anti-inflammatory drugs. Other side effects suchas injection-site reactions, flushing and laboratory abnormalities also need to be monitored closely. Another important factor relatedto treatment discontinuation is perceived lack of efficacy as a consequence of patients having unrealistic expectations of treatmenteffects; therefore, proper management of treatment expectations is needed from the outset of treatment with disease-modifyingdrugs. Nurse-led patient education therapy initiation may be helpful to manage patients’ expectations and to anticipate and reducethe impact of side effects on adherence to treatment. In any case, individualized monitoring of treatment adherence is highlyrecommended in clinical daily practice to achieve the levels of efficacy seen in clinical trials.
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Jaume Sastre-GarrigaMultiple Sclerosis Center of Catalonia, Unit of Clinical Neuroimmunology, Vall d’Hebron University HospitalBarcelona, Spain
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.
L7 - Fostering adherence to DMDs - The Nurseperspective
Multiple Sclerosis (MS) is a chronic disabling neurological condition for which there is no known cure.
At present there are number of disease modifying therapies (DMTs) for reducing the relapse rate with a possibility of slowing downthe progression and long term disabling effect of the disease.
These DMTs have modest efficacy, however to achieve this patients must comply with the prescribed therapeutic regimen and learnto tolerate side effects. A number of studies demonstrated that there is a wide variation to adherence and anything other than 100%compliance can affect the achievement of the expected efficacy.
Patient adherence to therapy is dependent upon their level of knowledge, understanding, expectations of therapy and the on-goingguidance and support they receive.
Nurses are pivotal to ensure that patients have the knowledge they require, are involved in decision making and supported duringtheir therapy in order to achieve high adherence.
This presentation will focus on how the MS nurse can have the necessary input in supporting patients with selection of the righttreatment and in self-managing their therapies to achieve the maximum effect of the DMT.
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Hüseyin HüseyinNeurology Department , Luton & Dunstable NHS Trust, Luton, UK
L8 - The comprehensive interaction with patients out fromthe hospital
Abstract not in hand at the time of going to press.
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Claudio GasperiniDepartment of Neurosciences, San Camillo Forlanini Hospital, Rome, Italy
References:1 - Freeman JA, Thompson AJ. Community services in multiple sclerosis: still a matter of chance. J Neurol Neurosurg Psychiatry 2000; 69: 728-322 - Shah E, Harwood R. Acute management: admission to hospital in stroke: epidemiology, evidence and clinical practice. 2nd ed. Oxford: Oxford University Press,
19993 - Shepperd S, Harwood D, Gray A, Vessey M, Morgan P. Randomised controlled trial comparing hospital at home with in-patient hospital care I: three months
follow-up of health outcomes. BMJ 1998; 316: 1786–914 - Shepperd S, Iliffe S. Effectiveness of hospital at home compared to inpatient care. In: Cochrane Library. Oxford: Update Software, 19995 - Amato MP, Battaglia MA, Caputo D, Fattore G, Gerzeli S, Pitaro M, Reggio A, Trojano M; Mu. S. I. C. Study Group. The costs of multiple sclerosis: a cross-
sectional, multicenter cost-of-illness study in Italy. J Neurol. 2002; 249: 152-63
L9 - The comprehensive interaction with patients out fromthe hospital - The Nurse perspective
People with MS and their families face many challenges in their daily lives. They live with an unpredictable disease which oftenrelapses and remits without warning. The MS nurse is in a unique position to assess these patients and offer a wide variety ofassistance both in and out of the hospital.
The purpose of this presentation is to describe the domains of MS nursing and discuss the comprehensive interaction with patientsout of the hospital. The domains of MS nursing as defined by the International Organization of MS Nurses are: Clinical Practice,Advocacy, Education and Research. The nurse as a member of the multidisciplinary team is in a unique position to bring home basedcare to the person with MS and their families. The MS nurse can assist with identifying relapses, managing symptoms, providingpsychosocial support and initiating and managing disease modifying therapies at home. The nurse plays a pivotal role in medicationadherence.
People with advanced MS also require a significant amount of care at home and the MS nurse is very important in assisting caregivers with daily management. Changes to the daily routine may need to be made based on current and changing MS symptoms.Often with the assistance of the MS nurse the patient is most effectively managed in the home thus avoiding costly hospitaladmission.
The comprehensive interaction with patients out of the hospital from the nurse’s perspective results in an important partnershipbetween the physician, patient, family and nurse to promote healthy living and hope.
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Amy Perrin RossDepartment of Neurosciences, Loyola University Medical Center, Oak Brook, Illinois, USA
L10 - Cognitive problems
Only during the past 20 years clinicians have become aware of the prevalence and functional impact of MS-related cognitiveimpairment. Cognitive dysfunction is highly variable and estimates of its frequency range from 43% to 65% of the cases. The domainsmost commonly impaired are episodic memory, complex attention and information processing speed, executive functions and verbalfluency. Language, semantic memory and attention span are less frequently involved.
Cognitive dysfunction can have a dramatic impact on several aspects of quality of life, independently by the degree of Physicaldisability, and is one of the most important predictors of the patient work status. Attempt therapeutic approaches include the useof disease-modifying drugs, symptomatic drugs for fatigue and donepezil, as well as different rehabilitative programs.
Due to the high prevalence and great functional impact of MS-related cognitive impairment, the search for effective therapeuticstrategies is an urgent priority for future research.
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Maria Pia AmatoDepartment of Neurological and Psychiatric Sciences, University of Florence, Florence, Italy
L11 - Cognitive rehabilitation
Multiple sclerosis (MS) is a demyelinating disease of the central nervous system that commonly leads to inflammatory and atrophicbrain pathology, often causing cognitive impairment. The different course of the disease, the time of the onset, the lesion burden,the age, the social and personological status of the subject and the “cognitive reserve” can all occur in the expression of the cognitivefunctions and in their possible alteration. A lot of study stressed the importance of neuropsychological evaluation in the MS tocharacterize the type of disease and to monitoring the course of cognitive dysfunctions. The reported prevalence of cognitiveimpairments in people with MS ranges from 40–65% depending on study setting. The functions most consistently affected arecontrolled attentional processing, speed of information processing, explicit anterograde memory, abstract reasoning and executivefunctions. This evidence introduce the query about the efficacy of the use of cognitive interventions in people with MS. In fact theremediation of cognitive impairment is less well researched and understood. For the Cochrane Collaboration Library the evidenceof the effectiveness of intervention was inconclusive, partly because of the large number of outcome measures that are frequentlyused in this study, and partly because of small sample size. Further, the small number of study actually conducted means that it isdifficult to generalise about whether psychological approaches to treating cognitive impairment are helpful. The review by O’Brienet al. (2008) conclude that cognitive rehabilitation in MS is in its relative infancy and more methodologically rigorous research isneeded to determine the effectiveness and efficacy of various cognitive rehabilitation interventions. This findings should be motivateto assess randomised and double-blind trials focusing on the development of a gold standard for neuropsychological test measuresand training tools. A more recent review by Rosti-Otajärvi et al. (2011) indicates low level evidence for the positive effects ofneuropsychological rehabilitation in MS. In this systematic review, recommendations are given for improving the quality of futurestudies on the effects of neuropsychological rehabilitation in MS.
Neuroplasticity is a fundamental issue that supports the scientific basis for treatment of acquired brain damage with goal-directedexperiential therapeutic programs in the context of rehabilitation approaches to the functional consequences of the damage. fMRIhas shown potential as tool for visualization of cognitive training effects and even for verification of its efficacy. On the other hand it’snecessary to consider the rehabilitative training as a process involving different steps and people. In this way It’s necessary, in theclinical practice, assess an extensive neuropsychological evaluation, collect information about the personality features, the qualityof live and the motivation of the patient, plan and explain the intervention and then use specific tools to verify the efficacy at shortand long term.
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Monica FalautanoFunctional Unit of Psychology, Department of Neurology and Clinical Neurophisiology, IRCCS, Fondazione San Raffaele del Monte Tabor, Milan, Italy
References:- Thomas PW, Thomas S, Hillier C, Galvin K, Baker R. Psychological interventions for Multiple Sclerosis - The Cochrane Collaboration 2007, revised 2009.- Cicerone KD, Dahlberg C. Malec JF, et al. Evidence-based cognitive rehabilitation: Update review of the literature from 1998throught 2002. Arch Phys MedRehabil. 2005; 86(8): 1681-1692.
- Amato MP, Zipoli V. Portaccio E. Multiple Sclerosis-related cognitive changes: A review of cross-sectional and longitudinal studies. J. of Neurol. Sc. 2006, 245:41-46.
- Wilson B.A. OBE. Cognitive Rehabilitation in the 21st Century. Neurorehab. and Neurall Repair Vol. 16 n° 2 2002. - O’Brien AR, Chiaravalloti N., Goverover Y, DeLuca J. Evidenced-based cognitive rehabilitation for persons with multiple sclerosis: a review of the literature. ArchPhys Med Rehabil, 2008, 89: 761-769.
- Sumowski JF, Glenn RW, Chiaravalloti N, and De Luca J. Intellectual enrichment lessens the effect of brain atrophy on learning and memory in multiple sclerosis.Neurology June 15, 2010 vol. 74 no. 24 1942-1945.
- Vallar, G.; Cantagallo, A.; Cappa, S.; Zoccolotti, P et al. La riabilitazione neuropsicologica. Un analisi basata sul metodo evidence-based medicine. Springler 2012- Rosti-Otajärvi E M et al.: “Neuropsychological rehabilitation for multiple sclerosis”, Cochrane Database of Systematic Reviews, Issue 11, art. no.: CD009131.DOI:10.1002/14651858.CD009131.pub2, dec. 2011.
L12 - Affective and Emotional problems
Abstract not in hand at the time of going to press.
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Giancarlo ComiDepartment of Neurology, Institute of Experimental Neurology, Vita-Salute San Raffaele University, Milan, Italy
L13 - Management of psychological problems
Abstract not in hand at the time of going to press.
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Dawn LangdonDepartment of Psychology, Royal Holloway University of London, London, UK
References:- Dennison L, Moss-Morris R. Cognitive-behavioral therapy: what benefits can it offer people with multiple sclerosis? Expert Rev Neurother. 2010 Sep;10(9):1383-90. Review.
- Giordano A, Granella F, Lugaresi A, Martinelli V, Trojano M, Confalonieri P, Radice D, Solari A; on behalf of the SIMS-Trial group. Anxiety and depression inmultiple sclerosis patients around diagnosis. J Neurol Sci. 2011 May 27. [Epub ahead of print]
- Grossman P, Kappos L, Gensicke H, D'Souza M, Mohr DC, Penner IK, Steiner C.MS quality of life, depression, and fatigue improve after mindfulness training: arandomized trial. Neurology. 2010 Sep 28;75(13):1141-9.
- Lincoln NB, Yuill F, Holmes J, Drummond AE, Constantinescu CS, Armstrong S, Phillips C. Evaluation of an adjustment group for people with multiple sclerosisand low mood: a randomized controlled trial. Mult Scler. 2011 May 25. [Epub ahead of print]
- Plow MA, Finlayson M, Rezac M. A scoping review of self-management interventions for adults with multiple sclerosis. PM R. 2011 Mar;3(3):251-62. Review.
L14 - Affective and emotional problem - The nurseperspectives
Affective and emotional problems arise frequently in patients with multiple sclerosis (MS), either as a direct result of the underlyingdisease process or as a sequelae to the challenges of coping with an unpredictable, potentially disabling chronic illness.Psychological reactions to the diagnosis of MS, the neuropathology of the disease process, anxiety related to the uncertainty of futureevents or anticipatory grief over the perceived or feared loss of former self can all have an impact on the emotional life of individualswe care for. The incidence of conditions such as depression, anxiety and suicidality are known to be increased in MS and organicchanges to affect such as euphoria or emotional lability can also be increased in those with MS. Emotional responses to illness suchas grief, low self-esteem, withdrawal, loss of interest and anger can also be part of the clinical profile. When collected in a systematicway, information elicited in a nursing assessment interview can be used to identify relevant affective and emotional issues faced bypatients. In addition, this information may serve as a framework for management of these issues by nurses, as well as referral toother health professionals involved in the care of patients with MS. Nurses are well-positioned to assess, educate, intervene andevaluate effectiveness of interventions, with respect to affective and emotional issues, as part of the comprehensive care team.
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Diane LowdenMS Clinic, Montreal Neurological Hospital, Montreal, Quebec, Canada
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.
L15 - Motor problems and rehabilitation - The doctor perspective
Abstract not in hand at the time of going to press.
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Fred D. LublinCorinne Goldsmith Dickinson Center for MS, Mount Sinai School of Medicine, New York, NY, USA
L16 - Motor problems and rehabilitation - The physiotherapist perspective
Multiple sclerosis (MS) is associated with a variety of symptoms and functional deficits that result in a range of progressiveimpairments and handicap. The symptoms, which contribute to loss of independence and restrictions to participate in socialactivities, are often responsible for a continuing decline in quality of life. The main objective of rehabilitation is, therefore, to ease theburden of symptoms by improving self-performance and independence. Compensation of functional deficits, adaptation andreconditioning, together with management of symptoms, impairment, emotional coping and self-estimation, are all important long-term objectives. There are specific treatment recommendations for patients with spastic disorders, sensory loss and ataxia.Although rehabilitation has no direct influence on disease progression, recent studies indicate that this form of intervention improvespersonal activities and participation in social activities, thereby improving quality of life. The improvements often outlast thetreatment period by several months. These findings suggest that quality of life is determined by disability and handicap more thanby functional deficit and disease progression.
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Urs N. GamperDepartment of Therapy, Valens Clinic Rehabilitation Center, Valens, Switzerland
L17 - Genito-Urinary problems in MS patient
Multiple sclerosis (MS) is a frequent chronic neurologic disease in young persons. Cause is unknown. Both genetic susceptibilityplus environmental factors have been involved as needed for the development of the disease, Treatment to modify pathogenesis isonly partially efficacious.
MS produces multiple lesions along the neuraxis, all neurological systems are affected. A low percent of patients present initiallywith urologic complaints, alone or associated with other neurologic symptoms. Anyhow, there may be evidence of urologicdysfunction in clinically silent MS patients. During the course of the disease the majority of patients develop urinary symptoms(urgency, frequency, urge/incontinence, hesitancy, retention). The severity of bladder symptoms is unrelated to the duration of thedisease, but parallels the severity of other neurologic symptoms, particularly those due to pyramidal tract involvement. For themajority of MS patients the bladder symptoms are troublesome rather than life threatening. Renal failure attributable to neurogenicbladder dysfunction is uncommon.
Genital alterations are also infrequent as an onset symptom, but are frequent along the course of the disease (around 70% will sufferfrom erectile dysfunction, reduced libido, delayed or loss of ejaculation, reduced genital sensation in males. In females reducedlibido, orgasmic dysfunction and reduced vaginal lubrication and sensation are common) causing a negative impact on the qualityof life of patients.
Many of these problems have symptomatic treatment. The treatment is directed to prevent further complications. Consequently anincrease of QoL is obtained. Adequate workup and individualised treatment are paramount in the case of genitourinary alterations.
Nowadays, the majority of the symptoms can be treated or alleviated with conservative treatments. Expert urological orgynaecological consultation should be used only if more aggressive diagnostic or therapeutic measures are needed.
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Oscar FernándezNeuroscience Institute Service of Neurology, University Regional Hospital “Carlos Haya”, Malaga, Spain
L18 - Genito-Urinary problems in MS patient - The nurse perspective
It is estimated that as high as 90% of people with multiple sclerosis (MS) experience some type of urinary problem over the courseof the disease. The importance of an interdisciplinary approach becomes significant, particularly with a symptom that requires theinvolvement of different professionals, each with specific knowledge of evaluation and treatment. The MS nurse is perhaps theprofessional most likely to be in a position to initiate the process of identifying urological dysfunction. Starting the evaluation with areview of symptoms recorded in the patient’s medical records over time, the use of a urinary diary and a check of the patient’s postvoid residual at the time of each visit, aids the MS nurse in recognizing which urinary dysfunction could be affecting the patient. TheMS nurse can also have an important role in teaching the patient behavior strategies that aid in both evaluating and treating urinarydysfunction. Finally, the MS nurse can be the primary instructor of techniques related to intermittent catheterization procedures.
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Roberta MottaItalian Multiple Sclerosis Society, Rehabilitation Centre, Genoa, Italy
NOTES
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