12Th MS Nurse International Workshop

FINAL PROGRAM AND ABSTRACTS

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b o t c O - n e ed w , S urg Gothenb

12 th MS Nurse International Workshop

Your Continuing Medical Education Partner www.seronosymposia.org GENERAL INFORMATION

VENUE The Workshop will take place at the: Gothenburg Convention Centre, Sweden (GCC) Mässans Gata 20, SE-402 26 Gothenburg, Sweden www.gcc.se

LANGUAGE The official language of this Workshop will be English.

TRAVEL INFORMATION Gothenburg is the second largest city in Sweden. It is located on the Swedish west coast. Gothenburg is home to many students, as the city includes both the University of Gothenburg, one of the largest universities in the Nordic countries, and Chalmers University of Technology. The sea, trade and industrial history of the city is evident in its cultural life. Due to the Gothenburg's advantageous location in the centre of Scandinavia, trade and shipping have always played a role in the city's economic history, and they continue to do so. Gothenburg port has come to be the largest harbour in the whole of Scandinavia. Gothenburg is a popular destination for tourists on the Swedish west-coast, and offers a number of cultural and architectural highlights. The first major architecturally interesting period is the 18 th century when the East India Company made Gothenburg an important trade city. Imposing stone houses with a Classical look were erected around the canals. One example from this period is the East India House, which today houses Gothenburg’s City Museum. Other interesting buildings are the Gothenburg Museum of Art, the city's theatre, the concert hall, the Gothenburg Opera house and the Museum of World Culture. One of Gothenburg's most popular natural tourist attractions is the Southern Gothenburg Archipelago, which is a set of many picturesque islands that can be reached by ferry boat. 12 th MS Nurse International Workshop

Serono Symposia International Foundation 12 TH MS NURSE INTERNATIONAL WORKSHOP Gothenburg, Sweden - October 12, 2010

AIM OF THE WORKSHOP This is an educational program created to encourage the dissemination of scientific knowledge among nurses working in the field of Multiple Sclerosis (MS). Disease management in research and clinical practice, with a special emphasis on the nurses’ crucial role, 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 OBJECTIVES At the conclusion of this Workshop, participants will: • Be updated on diagnostic tools used to define physical and psychological disorders related to MS • Be able to implement the most advanced tools in disease management in their practice • Have an updated knowledge of the management of experimental therapies and clinical trials in Multiple Sclerosis

TARGET AUDIENCE Nurses involved in the treatment of persons with Multiple Sclerosis.

ACCREDITATION This continuing education activity has been approved by the International Council of Nurses (ICN) for 6.45 International Continuing Nursing Education Credits (ICNECs).

All Serono Symposia International Foundation programs are organized solely to promote the exchange and dissemination of scientific and medical information. No forms of promotional activities are permitted. There may be presentations discussing investigational uses of various products. These views are the responsibility of the named speakers, and do not represent an endorsement or recommendation on the part of Serono Symposia International Foundation. This program is made possible thanks to the unrestricted Educational grant received from: Centre d’Esclerosi Multiple de Catalunya, Vall d'Hebron University Hospital, ComtecMed, Congrex Sweden, Congrex Switzerland, Cryo-Save, Datanalysis, Esaote, Fundación IVI, ISFP International Society for Fertility Preservation, ISMH International Society of Men’s Health, K.I.T.E., Merck Serono, Ministry of Health of the State of Israel, University of Catania. SCIENTIFIC ORGANIZER MS NURSE WORKSHOP STEERING COMMITTEE

Giancarlo Comi Sharalyn Anderson Department of Neurology Department of Neurology Institute of Experimental Neurology North East Lincolnshire Care Trust Vita-Salute San Raffaele University London, UK Milan, Italy Dawn Carle Department of Neurology Ottawa Hospital WORKSHOP MODERATOR General Campus Ottawa, Ontario, Canada Eija Luoto Masku Neurological Rehabilitation Centre Giancarlo Comi Masku, Finland Department of Neurology President RIMS - Rehabiliation in MS Institute of Experimental Neurology European network of MS Centres Vita-Salute San Raffaele University Milan, Italy Amy Perrin Ross Department of Neurosciences Sara Dishon Loyola University Medical Center The MS Centre Oak Brook, Illinois, USA Carmel Medical Centre Immediate Past President IOMSN - Haifa, Israel International Organization of MS Nurses Mark S. Freedman The Ottawa Hospital MS Research Unit Ottawa, Ontario, Canada

Barbara Kieser Neurologische Klinik Kantonsspital Kuttingen, Switzerland

Dawn Langdon Department of Psychology Royal Holloway University of London SCIENTIFIC SECRETARIAT London, UK Serono Symposia International Foundation Salita di San Nicola da Tolentino, 1/b Eija Luoto 00187 Rome, Italy Masku Neurological Rehabilitation Centre Associate Project Manager: Serena Dell’Ariccia Masku, Finland Tel.: +39-06-420 413 251 Fax: +39-06-420 413 677 E-mail: [email protected] Roberta Motta Italian Multiple Sclerosis Society Serono Symposia International Foundation is a Swiss Foundation with headquarters in Rehabilitation Centre 14, rue du Rhône, 1204 Genève, Switzerland Genoa, Italy ORGANIZING SECRETARIAT Amy Perrin Ross Department of Neurosciences Meridiano Congress International Via Mentana, 2/B - 00185 Rome - Italy Loyola University Medical Center Congress Coordinator: Federica Russetti Oak Brook, Illinois, USA Phone: +39-06-88595 209 Fax: +39-06-88595 234 E-mail: [email protected] LIST OF SPEAKERS AND CHAIRMEN

Maria Pia Amato Jürg Kesselring Department of Neurological Department of Neurology and Psychiatric Sciences and Neurorehabilitation University of Florence Valens Clinic Rehabilitation Centre Florence, Italy Valens, Switzerland

Sharalyn Anderson Dawn Langdon Department of Neurology Department of Psychology North East Lincolnshire Care Trust Royal Holloway University of London London, UK London, UK

Giancarlo Comi Fred Lublin Department of Neurology Corinne Goldsmith Dickinson Center for MS Institute of Experimental Neurology Mount Sinai School of Medicine Vita-Salute San Raffaele University New York, NY, USA Milan, Italy Eija Luoto Monica Falautano Masku Neurological Rehabilitation Centre Functional Unit of Psychology Masku, Finland Department of Neurology and Clinical Neurophisiology Xavier Montalban IRCCS Fondazione San Raffaele Multiple Sclerosis Center of Catalonia del Monte Tabor Unit of Clinical Neuroimmunology Milan, Italy Vall d’Hebron University Hospital Barcelona, Spain Oscar Fernández Neuroscience Institute Roberta Motta Service of Neurology Italian Multiple Sclerosis Society University Regional Hospital “Carlos Haya” Rehabilitation Centre Malaga, Spain Genoa, Italy

Mark S. Freedman Amy Perrin Ross The Ottawa Hospital Department of Neurosciences MS Research Unit Loyola University Medical Center Ottawa, Ontario, Canada Oak Brook, Illinois, USA

Urs N. Gamper Jaume Sastre-Garriga Department of Therapy Multiple Sclerosis Center of Catalonia Valens Clinic Rehabilitation Center Unit of Clinical Neuroimmunology Valens, Switzerland Vall d’Hebron University Hospital Barcelona, Spain Claudio Gasperini Department of Neurosciences San Camillo Forlanini Hospital Rome, Italy

June Halper CMSC/IOMSN Hackensack, NJ, USA SCIENTIFIC PROGRAM TUESDAY - OCTOBER 12, 2010

08.30 Serono Symposia International Foundation Opening Giancarlo Comi , Italy

08.45 Workshop Introduction Eija Luoto , Finland - Amy Perrin Ross , USA

SESSION I PRACTICAL ISSUES AND SOLUTIONS IN DMD s Session Chair: Eija Luoto , Finland

09.00 L1: Immunomodulatory treatments Fred Lublin , USA

09.20 L2: Fostering adherence to DMDs Jaume Sastre-Garriga , Spain

09.40 L3: Fostering adherence to DMDs - The Nurse perspective Sharalyn Anderson , UK

10.00 Discussion

10.10 L4: Nurses: key interface between patients and physicians Mark S. Freedman , Canada

10.30 L5: MS at home assistance Claudio Gasperini , Italy

10.50 L6: MS at home assistance - The Nurse perspective Amy Perrin Ross , USA

11.10 Discussion

11.20 Coffee Break SESSION II COGNITIVE PROBLEMS IN MS Session Chair: Eija Luoto , Finland

11.30 L7: Cognitive problems in MS Maria Pia Amato , Italy

11.50 L8: Cognitive rehabilitation in MS Monica Falautano , Italy

12.10 Discussion

SESSION III MOTOR PROBLEMS AND REHABILITATION IN MS

Session Chair: Eija Luoto , Finland

12.20 L9: Motor problems and rehabilitation in MS Jürg Kesselring , Switzerland

12.40 L10: Motor problems and rehabilitation in MS - The Physiotherapist perspective Urs N. Gamper , Switzerland

13.00 Discussion

13.10 Lunch

SESSION IV EMOTIONAL PROBLEMS IN MS

Session Chair: Amy Perrin Ross , USA

14.30 L11: Affective and emotional problems in MS Giancarlo Comi , Italy

14.50 L12: Management of psychological problems in MS Dawn Langdon , UK

15.10 Discussion Scientific Program

SESSION V GENITO-URINARY PROBLEMS IN MS PATIENT

Session Chair: Amy Perrin Ross , USA

15.20 L13: Genito-Urinary problems in MS patient Oscar Fernández , Spain

15.40 L14: Genito-Urinary deficiency in MS patient - The nurse perspective Roberta Motta , Italy

16.00 Discussion

16.10 Coffee break

SESSION VI EXPERIMENTAL AND ROUTINE THERAPY MANAGEMENT IN MS RESEARCH CENTERS

Session Chair: Amy Perrin Ross , USA

16.30 L15: MS experimental therapies Xavier Montalban , Spain

16.50 L16: The role of nurses in the research center (The nurse perspective) June Halper , USA

17.10 Discussion and concluding remarks

17.30 End of the Workshop DISCLOSURE OF FACULTY RELATIONSHIPS

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

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

Maria Pia Amato Declared receipt of grants and contracts from Bayer Schering, Aventis Pharma, Merk Serono, Biogen Dompé; declared receipt of honoraria or consultation fees Bayer Schering, Aventis Pharma, Merck Serono, Biogen Dompé; declared to be member of a company advisory board, board of directors or other similar group: Bayer Schering, Aventis Pharma, Merk Serono, Biogen Dompé. Sharalyn Anderson Declared no potential conflict of interest. Giancarlo Comi Declared receipt of grants and contracts from Novartis, Teva Pharmaceutical Industries Ltd., Sanofi- Aventis, Merck Serono, Bayer Schering, Biogen-Dompé. Monica Falautano Declared no potential conflict of interest. Oscar Fernández Declared no potential conflict of interest. Mark S. Freedman Declared receipt of research or educational grants from BayerHealthcare, Genzyme, EMD Canada. Declared receipt of honoraria or consultation fees from BayerHealthcare, BiogenIdec, EMD Canada, Novartis, Sanofi-Aventis, Teva Canada Innovation. Declared to be member of a company advisory board, board of directors or other similar group: BayerHealthcare, Biogen Idec, Merck Serono, Novartis, Sanofi- Aventis, Celgene. Urs N. Gamper Declared no potential conflict of interest. Claudio Gasperini Declared no potential conflict of interest. June Halper Declared receipt of honoraria or consultation fees from Bayer healthcare, Biogen Idec, Acorda therapeutics. Jürg Kesselring Declared no potential conflict of interest. Dawn Langdon Declared receipt of grants and contracts: Bayer Healthcare,; declared member of a company advisory board, board of directors or other similar group of Bayer Healthcare, Novartis, declared participation in a company sponsored speaker’s bureau of Bayer Healthcare, Merck-Serono, Sanofi-Aventis. Fred Lublin Declared sources funding for research from Acorda therapeutics, Biogen Idec, Genentech, Novartis Pharmaceuticals Corp, teva Neiroscience Inc, Genzyme, Sanofi Aventis, NIH, NMSS. Declared Consulting agreement/advisory boards/DSMB: Bayer Healthcare Pharmaceuticals, Biogen Idec, BioMS medical Corp, EMD Serono Inc, Genentech Inc, Novartis, Pfizer, Teva Neuroscience, Genmab, Medicinova, Actelion, Allozyne, Sanofi-Aventis, Questcor, Acorda, Avanir, Roche, Celgene, Abbott. Speakers Bureau/Honorarium agreement: EMD Serono, Pfizer, Teva Neuroscience. Declared financial interests/Stock ownership: Cognition Pharmaceuticals Inc. The author declared that he may discuss unapproved agents that are in the MS developmental pipeline without any recommendation on their use. Eija Luoto Declared no potential conflict of interest. Disclosure of Faculty Relationships

Xavier Montalban Declared receipt of grants and contracts: Bayer Schering, Biogen Idec, Novartis, Merck Serono, Teva Sanofi Aventis, Almirall. Roberta Motta Declared no potential conflict of interest. Amy Perrin Ross Declared no potential conflict of interest Jaume Sastre-Garriga Declared to be member of a company advisory board, board of directors or other similar group: Novartis, Teva, Bayer. Declared the participation in a company sponsored speaker’s bureau: Sanofi-Aventis, Novartis, Almirall, Merck-Serono, Biogen.

IMMUNOMODULATORY TREATMENTS

Fred Lublin Corinne Goldsmith Dickinson Center for MS, Mount Sinai School of Medicine, New York, NY, USA

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1. Xxx. Abstract not in hand at the time of going to press. 2. Xxx. Learning Objectives By the end of the programme participants should appreciate: • International Variation in Assisted Reproduction Practice • Need to collect data to reflect practice • Value of e-Learning to facilitate best practice

Introduction The Methods The Results The

Conclusions These results L2

FOSTERING ADHERENCE TO DMD s

Jaume Sastre-Garriga Multiple Sclerosis Center of Catalonia, Unit of Clinical Neuroimmunology, Vall d’Hebron University Hospital, Barcelona, Spain

Evidence coming from the pivotal clinical trials and from some other well-performed clinical trials has clearly demonstrated the benefit of immunomodulatory therapies in MS. It is also clear that present therapies are not without side effects and mode of administration is still cumbersome for a number of patients; these factors impact on adherence to treatment, which may render the therapeutic efforts futile. Several studies have shown that most drop-outs occur in the early phases of therapy so special care needs to be taken when patients start their immunomodulating therapy in order to avoid treatment discontinuation. Available evidence suggests that individualized care is an important factor to keep drop-out rates low; in this regard, management of side effects of therapies is crucial, as it is responsible for almost a half of all discontinuations. Another important factor related to treatment discontinuation seems to be lack of efficacy; therefore, close follow-up of non-adherent patients is highly recommended to increase therapy efficacy and to achieve an early identification of patients with poorer prognosis. Side effects profile of IFNbeta preparations and GA are not entirely overlapping. In the case of IFNbeta preparations, it is especially important to manage flu-like symptoms at onset of therapy. Several strategies can be implemented to diminish patient discomfort, such as gradual dose increase and anti-inflammatory therapy administration schemes. Other side effects such as injection site reactions, flushing and laboratory abnormalities also need to be closely monitored. Nurse-led patient education at onset of therapy may be helpful to manage patients’ expectations from therapy and to anticipate and diminish the impact of side effects on adherence to treatment. Finally, even though results from clinical trials are the keystone to our clinical practice, measuring efficacy of therapy in clinical practice in an appropriate manner is crucial to obtain the most from available therapies. Clinical daily practice individualized monitoring of treatment response, treatment adherence, and side effects profile is therefore highly recommended if clinical trials efficacy results are to be met in our clinics. ABSTRACTS

FOSTERING ADHERENCE TO DMD s - THE NURSE PERSPECTIVE

Sharalyn Anderson Department of Neurology, North East Lincolnshire Care Trust, London, UK

Multiple Sclerosis affects the whole family unit; it inflicts a heavy price on the patient, their families and the health care system. Quality of life is sometimes impaired, unemployment is frequent due to sustained symptoms and further complications are common as the condition enters into the chronic stage. Disease-modifying drugs have, over the last few years, made a significant difference in the management of the disease. A diagnosis of Multiple Sclerosis in 2010 is not what anyone wants; however, to be diagnosed with the disease now offers far more choice of treatment and help than if it were diagnosed ten years ago. Patients have seen fewer symptoms and frequency of relapse reduced whilst on DMD therapies. Recent new therapies have made significant impact on the slowing of the disability progression and quality of life. The MS Specialist Nurse plays a major role in ensuring patience adherence and compliance in order to obtain optimal health outcomes for the patients using DMD therapies. The multidisciplinary teams continue to be the way forward where the Specialist Nurse plays a pivotal role in the monitoring of patients with their chosen therapy. However, we still need to ensure that measures are implemented to understand patient’s satisfaction and their understanding of the therapy. We need to ensure the therapies are explained and administered correctly to prevent inappropriate discontinuation. L4

NURSES: KEY INTERFACE BETWEEN PATIENTS AND PHYSICIANS

Mark S. Freedman The Ottawa Hospital, MS Research Unit, Ottawa, Ontario, Canada

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1. Xxx. Abstract not in hand at the time of going to press. 2. Xxx.

1. Adapting the ovarian stimulation protocol according to the patient’s individual profile and the experience from her previous stimulation cycles. 2. Reducing FSH and compensating with LH in the stimulation protocol to selectively stimulate the greatest follicles and prevent the growth of smaller ones. Learning Objectives By the end of the programme participants should appreciate: • International Variation in Assisted Reproduction Practice • Need to collect data to reflect practice • Value of e-Learning to facilitate best practice

Introduction The Methods The Results The

Conclusions These results

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. ABSTRACTS

MS AT HOME ASSISTANCE

Claudio Gasperini Department of Neurosciences, San Camillo Forlanini Hospital, Rome, Italy

Multiple sclerosis (MS) is associated with various symptoms and functional deficits resulting in a range of progressive impairments and handicaps. Symptoms that contribute to loss of independence and restrictions in social activities produce continuing decline in quality of life. Management of MS requires a multidisciplinary approach including drug therapy, psychological counselling, and physiotherapy. Even if in recent years much progress has been made in therapeutic MS research, a concomitant advancement in the support of patients in their daily activities improvement and in their assistance is not always so tangible.[1] Patients in some countries (especially the UK) are not managed solely in hospitals [2]. There is evidence that most patients affected by progressive forms of MS need major long-term support at home or in the community, rather than through hospital care. Specialised at- home care has had variable success as an alternative way to provide organised multidisciplinary care for various diseases [3, 4]. MS represents a high economic burden, with indirect costs greatly exceeding direct costs [5] and, for this reason, better understanding of the clinical effectiveness and costs of a supplementary home-assistance and home-exercise rehabilitation programme is needed. In this lecture we will present our study regarding a possible home-based care model for MS patients.

References: 1 - Freeman JA, Thompson AJ. Community services in multiple sclerosis: still a matter of chance. J Neurol Neurosurg Psychiatry 2000; 69 : 728-32 2 - Shah E, Harwood R. Acute management: admission to hospital in stroke: epidemiology, evidence and clinical practice. 2nd ed. Oxford: Oxford University Press, 1999 3 - 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 : 1786–91 4 - Shepperd S, Iliffe S. Effectiveness of hospital at home compared to inpatient care. In: Cochrane Library. Oxford: Update Software, 1999 5 - 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 L6

MS AT HOME ASSISTANCE - THE NURSE PERSPECTIVE

Amy Perrin Ross Department of Neurosciences, Loyola University Medical Center, Oak Brook, Illinois, USA (Immediate Past President IOMSN - International Organization of MS Nurses)

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1. Xxx. Abstract not in hand at the time of going to press. 2. Xxx..

Learning Objectives By the end of the programme participants should appreciate: • International Variation in Assisted Reproduction Practice • Need to collect data to reflect practice • Value of e-Learning to facilitate best practice

Introduction The Methods The Results The

Conclusions These results

COGNITIVE PROBLEMS IN MS

Maria Pia Amato Department of Neurological and Psychiatric Sciences, University of Florence, Florence, Italy

Only during the past 20 years clinicians have become aware of the prevalence and functional impact of MS-related cognitive impairment. Cognitive dysfunction is highly variable and estimates of its frequency range from 43% to 65% of the cases. The domains most commonly impaired are episodic memory, complex attention and information processing speed, executive functions and verbal fluency. 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 physical disability, and is one of the most important predictors of the patient work status. Attempt therapeutic approaches include the use of 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 therapeutic strategies is an urgent priority for future research. L8

COGNITIVE REHABILITATION IN MS

Monica Falautano Functional Unit of Psychology, Department of Neurology and Clinical Neurophisiology, IRCCS Fondazione San Raffaele del Monte Tabor, Milan, Italy

Multiple sclerosis (MS) is a demyelinating disease of the central nervous system that commonly leads to inflammatory and atrophic brain 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 cognitive functions and in their possible alteration. Many studies have stressed the importance of neuropsychological evaluation in people with MS to characterize the type of disease and to monitor the course of cognitive dysfunctions. The reported prevalence of cognitive impairments in people with MS ranges from 40-65% depending on study setting. The functions most consistently affected are controlled attentional processing, speed of information processing, explicit anterograde memory, abstract reasoning and executive functions. This evidence introduces the query about the efficacy of the use of cognitive interventions in people with MS. In fact, the remediation of cognitive impairment is less well researched and understood. For the Cochrane Collaboration Library the evidence of the effectiveness of intervention was inconclusive, partly because of the large number of outcome measures that are frequently used in this study, and partly because of small sample size. Further, the small number of studies actually conducted means that it is difficult to generalise about whether psychological approaches to treating cognitive impairment are helpful. Also the review by O’Brien et al. (2008) concludes that cognitive rehabilitation in MS is in its relative infancy and more methodologically rigorous research is needed to determine the effectiveness and efficacy of various cognitive rehabilitation interventions. These findings should provide motivation to assess randomised and double-blind trials focusing on the development of a gold standard for neuropsychological test measures and training tools. Neuroplasticity is a fundamental issue that supports the scientific basis for treatment of acquired brain damage with goal-directed experiential therapeutic programs in the context of rehabilitation approaches to the functional consequences of the damage. fMRI has shown potential as a tool for visualization of cognitive training effects and even for verification of its efficacy. On the other hand it is necessary to consider the rehabilitative training as a process involving different steps and people. In this way it is necessary, in the clinical practice, to assess an extensive neuropsychological evaluation, collect information about the personality features, the quality of life and the motivation of the patient, plan and explain the intervention and then use specific tools to verify the efficacy at short and long term.

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 Med Rehabil. 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 21 st 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. Arch Phys Med Rehabil, 2008, 89 : 761-769. ABSTRACTS

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MOTOR PROBLEMS AND REHABILITATION IN MS

Jürg Kesselring and Urs N. Gamper Department of Neurology and Neurorehabilitation, Valens Clinic Rehabilitation Centre, Valens, Switzerland

Multiple sclerosis (MS) is associated with a variety of symptoms and functional deficits that result in a range of progressive impairments and handicap. The symptoms, which contribute to loss of independence and restrictions to participate in social activities, are often responsible for a continuing decline in quality of life. The main objective of rehabilitation is, therefore, to ease the burden of symptoms by improving self-performance and independence. Compensation of functional deficits, adaptation and reconditioning, 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 improves personal activities and participation in social activities, thereby improving quality of life. The improvements often outlast the treatment period by several months. These findings suggest that quality of life is determined by disability and handicap more than by functional deficit and disease progression. L11

AFFECTIVE AND EMOTIONAL PROBLEMS IN MS

Giancarlo Comi Department of Neurology, Institute of Experimental Neurology, Vita-Salute San Raffaele University, Milan, Italy

Multiple sclerosis (MS) has major impacts on emotions: changes of mood and behaviour include anxiety, depression, grief, euphoria and emotional lability. Each patient may suffer from one or more of these phenomena during his life and all these mood changes may have great influences on the quality of life and on the working activity, even more than physical disturbances. The pathophysiology of these disturbances is far from being clarified, with combined influences of nervous damage and reactions to a chronic disabling disease. Depression is the most frequent emotional disorder. Metanalysis revealed significantly higher scores for depression in MS patients compared to control groups. Depression symptoms may characterize the disease onset in some cases. Interestingly enough, in isolated syndromes depression is not observed, however at follow up patients who developed clinically definite MS resulted significantly depressed compared to patients who did not develop MS and to normal controls. In the early phases of the disease mood changes may be mostly explained by an adaptation to the disease. Depression prevalence tends to increase again in the more advanced phases of the disease as a reaction to the irreversible accumulation of disability. The frequency of suicide is increased by 7 times in MS population compared to the general population. If the depression is caused by the nervous damage we should expect some association with the measures of brain damage. The amount of lesions in periventricular areas, temporal and frontal lobes, as revealed by magnetic resonance imaging, resulted significantly correlated to the presence of depression in some small studies. The small dimension of the examined samples and some methodological problems limit the value of these observations. Immunological factors may also play a role in mood changes. An increased risk of depression has been observed in patients undergoing new attacks and it has been explained as a reaction to the increased impairment or to an adverse effect of steroid treatment. However the possibility of psychoneuroimmunologic dysfunction should also be considered (abnormal response to dexametasone suppressor test). Some medications, like steroids, anticonvulsivants, antispastics, etc. may also contribute to the depression. The negative impact of interferon beta treatment on mood reported in the Interferon beta-1b North American clinical trials has not been confirmed by subsequent studies with the same drug or other interferons. Emotional lability is also frequently observed in MS, as in other chronic diseases. Patients may exhibit sudden and unmotivated changes of the mood with periods of anger, irritability and aggressiveness lasting a few minutes. Euphoria has been for a long time considered very frequent in MS; more recent controlled studies indicate that it is present in not more than 10% of the patients. It is frequently associated to executive dysfunctions indicating the key role of frontal lobes. Affective release, emotional crescendo, behavioural abnormalities may also be observed in MS, but probably not more frequent than in the general population. Pharmacotherapy works in MS as in the general population, however the physician should consider the safety profile of the prescribed drugs because of the possible interference with other problems of the person with MS. Psychotherapy is of the outmost importance in order to help patients to adapt to affective and physical problems; it must be integrated with the involvement of the family and care givers. The correction of affective problems not only increase the quality of life but also allow a better compliance of etiologic treatments. ABSTRACTS

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MANAGEMENT OF PSYCHOLOGICAL PROBLEMS IN MS

Dawn Langdon Department of Psychology, Royal Holloway University of London, London, UK

People with multiple sclerosis (MS) endure significant emotional distress, in the context of their disabling physical symptoms. Emotional distress is in evidence during the process of diagnosis and throughout the variable and progressive course of the disease. Once a person is diagnosed with MS, they have a lifetime risk of 50% of experiencing a significant depressive episode. The increased suicide risk linked to MS is related to depression. At the less severe end of the scale, people with MS can also display a flattened affect that does not qualify for a depression diagnosis, but nevertheless signals a chronic sadness. Anxiety is also a feature of MS, often linked to disease progression or pain. Emotional distress is linked to a person’s understanding of MS, their illness representation. This can mediate coping strategies. Emotional distress and coping strategies both impact on disease management generally. Understanding patterns of emotional distress and coping responses can guide clinical management and support.

References: - Beckner V, Howard I, Vella L, Mohr DC. Telephone-administered psychotherapy for depression in MS patients: moderating role of social support. J Behav Med. 2010 Feb; 33 (1):47-59. - Ghaffar, O., Feinstein, A. The neuropsychiatry of multiple sclerosis: a review of recent developments. Curr Opin Psychiatry. 2007. 20 (3). 278-85. - Isaksson, A. K., Gunnarsson, L. G., Ahlstrom, G. The presence and meaning of chronic sorrow in patients with multiple sclerosis. J Clin Nurs. 2008. 16 (11C). 315-24. L13

GENITO-URINARY PROBLEMS IN MS PATIENT

Oscar Fernández Neuroscience Institute, Service of Neurology, University Regional Hospital “Carlos Haya”, Malaga, Spain

Multiple sclerosis (MS) is a frequent chronic neurologic disease in young persons. Cause is still unknown. Both genetic susceptibility plus environmental factors have been involved as needed for the development of the disease, Treatment to modify pathogenesis is only partially efficacious MS produces multiple lesions along the neuraxis, all neurological systems are affected. A low percent of patients present initially with urologic complaints, alone or associated with other neurologic symptoms, There may be evidence of urologic dysfunction 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 the disease, but parallels the severity of other neurologic symptoms, particularly those due to pyramidal tract involvement. For the majority of MS patients the bladder symptoms are troublesome rather than life threatening. Renal failure attributable to neurogenic bladder dysfunction is uncommon. Genital alterations are also infrequent as an onset symptom, but are frequent along the course of the disease around 70% will suffer from erectile dysfunction, reduced libido, delayed or loss of ejaculation, reduced genital sensation in males. In females reduced libido, orgasmic dysfunction and reduced vaginal lubrication and sensation are common) causing a negative impact on the quality of life of patients. Many of these problems have symptomatic treatment. The treatment is directed to prevent further complications. Consequently an increase of QoL is obtained. Adequate workup and individualised treatment are paramount in the case of genitor-urinary alterations. Nowadays, the majority of the symptoms can be treated or alleviated with conservative treatments. Consultation with urological or gynaecological experts should be used only if more aggressive diagnostic or therapeutic measures are needed. ABSTRACTS

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GENITO-URINARY DEFICIENCY IN MS PATIENT - THE NURSE PERSPECTIVE

Roberta Motta Italian Multiple Sclerosis Society, Rehabilitation Centre, Genoa, Italy

It is estimated that as high as 90% of people with multiple sclerosis (MS) experiences some type of urinary problem over the course of the disease. The importance of an interdisciplinary approach becomes significant, particularly with a symptom that requires the involvement of different professionals, each with specific knowledge of evaluation and treatment. The MS nurse is perhaps the professional most likely to be in a position to initiate the process of identifying urological dysfunction. Starting the evaluation with a review of symptoms recorded in the patient’s medical records over time, the use of a urinary diary and a check of the patient’s post void residual at the time of each visit, aids the MS nurse in recognizing which urinary dysfunction could be affecting the patient. The MS nurse can also have an important role in teaching the patient behavior strategies that aid in both evaluating and treating urinary dysfunction. Finally, the MS nurse can be the primary instructor of techniques related to the intermittent catheterization procedures. L15

MS EXPERIMENTAL THERAPIES

Xavier Montalban Multiple Sclerosis Center of Catalonia, Unit of Clinical Neuroimmunology, Vall d’Hebron University Hospital, Barcelona, Spain

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Abstract not in hand at the time of going to press. ABSTRACTS

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THE ROLE OF NURSES IN THE RESEARCH CENTER (THE NURSE PERSPECTIVE)

June Halper CMSC/IOMSN, Hackensack, NJ, USA

During the past three decades, multiple sclerosis nursing care has broadened its reach to extend beyond clinical practice to include clinical trials. While the role of the MS nurse clearly emphasizes day-to-day management of patients and families, there is an increased need to work collaboratively with the research team in important clinical trials that have made a huge difference in the lives of all those affected by MS. The nursing profession lends itself to this work because the task involved patient care, coordination, documentation, and ensuring that patients remain safe and healthy during their participation in a clinical trial. Nurses are in a unique position to perform these roles due to their knowledge, skills, and competencies. For patients, participation in clinical trials brings a sense of participation and empowerment as they contribute to the great good in healthcare. For nurses, there is an opportunity to use their administrative and creative skills to help patients successfully participate in activities that impact current and future care and research in multiple sclerosis.

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