807082 review-article2018 MSJ0010.1177/1352458518807082Multiple Sclerosis JournalPS Sorensen, G Giovannoni MULTIPLE SCLEROSIS MSJ JOURNAL Topical Review The Multiple Sclerosis Care Unit Multiple Sclerosis Journal 2019, Vol. 25(5) 627­–636 DOI: 10.1177/ https://doi.org/10.1177/1352458518807082 1352458518807082 https://doi.org/10.1177/1352458518807082 Per Soelberg Sorensen, Gavin Giovannoni, Xavier Montalban, © The Author(s), 2018. Christoph Thalheim, Paola Zaratin and Giancarlo Comi Article reuse guidelines: Abstract: Treatment of multiple sclerosis (MS) has become increasingly multifaceted and comprises sagepub.com/journals- permissions not only a variety of disease-modifying drugs with different mechanism of action but also a wide range of symptomatic therapies. Today, it is not possible for the family physician or even many general neurologists to master the current treatment algorithm, and this calls for the establishment of multi- disciplinary MS Care Units. The core of the MS Care Unit would, in addition to MS neurologists and nurses, typically comprise neuropsychologists, clinical psychologists, physiotherapists, occupational therapists and secretaries, and will work together with a group of different specialists on formalized diagnostic workup procedures, protocols for initiation and follow-up of disease-modifying therapies. It is obvious that the terms of performance of different MS Care Units will vary across regions and need to be balanced with clinical practice according to local conditions. Although the main objective for establishment of MS Care Units will be to offer the single MS patient seamless and correct manage- ment of the disease to increase patient satisfaction and quality of life, it may even be cost-effective for the society by maintaining the working ability and reducing the costs of home help and custodial care by keeping people with MS resourceful. Correspondence to: PS Sorensen Danish Multiple Sclerosis Keywords: Multiple sclerosis, multiple sclerosis care, multiple sclerosis treatment, multiple sclerosis Center, Department of Neurology, Copenhagen multidisciplinary management, multiple sclerosis disease-modifying therapy, multiple sclerosis University Hospital symptomatic treatment Rigshospitalet, Section 2082, Blegdamsvej 9, DK-2100 Copenhagen, Denmark. Date received: 21 June 2018; revised: 12 September 2018; accepted: 14 September 2018 pss@rh.dk Per Soelberg Sorensen Danish Multiple Sclerosis Center, Department of Introduction people and has a chronic long-lasting course. Disease- Neurology, Copenhagen University Hospital In neurology, the establishment of stroke units has modifying therapy (DMT) has become increasingly Rigshospitalet, Copenhagen, dramatically changed the treatment of acute stroke. multifaceted and comprises a wide range of drugs Denmark Gavin Giovannoni The comprehensive stroke unit has reduced the length with different mechanism of action and adverse Barts and The London School of stay in hospital and combined reduction of death effects that need meticulous monitoring.7,8 The quick of Medicine and Dentistry, Queen Mary University of and improved functional outcome compared to previ- access to a large set of investigations, including mag- London, London, UK ous treatments. Stroke patients, who receive organ- netic resonance imaging (MRI), multimodal evoked Xavier Montalban ized inpatient care in a stroke unit, are more likely to potentials, optical coherence tomography, immuno- Vall d’Hebron University Hospital, Barcelona, Spain be alive, independent and living at home 1 year after logical tests and antibody tests, requires an advanced Christoph Thalheim the stroke.1–3 level of organization. Even symptomatic therapy has European Multiple Sclerosis become more extensive, involving a wide range of Platform, Brussels, Belgium Another area, in which multidisciplinary clinics treatments for spasticity, bladder, bowel and sexual Paola Zaratin Italian Multiple Sclerosis have been shown to be useful, is in the manage- disturbances, pain, fatigue and cognitive impairment.9 Foundation, Genoa, ment of amyotrophic lateral sclerosis where a It is not possible for the family physician to master the Italy/Multiple Sclerosis International Federation number of studies have shown improved care of current treatment algorithm embracing an increasing (MSIF), London, UK the patients.4–6 number of disease-modifying drugs, and not even the Giancarlo Comi Department of Neurology general neurologist giving care to only a few patients and Institute of Experimental Treatment of multiple sclerosis (MS) is more complex with MS will acquire the expertise necessary to pro- Neurology, Vita-Salute San Raffaele University, San than treatment of acute stroke and amyotrophic lateral vide the gold standard of therapy in patients with Raffaele Hospital, Milan, sclerosis. MS is a disease that typically affects young therapeutically complicated MS. Italy journals.sagepub.com/home/msj 627 Multiple Sclerosis Journal 25(5) Table 1. Why we need comprehensive MS Care Unit to optimize treatment. • Disease and treatment complexity • Early diagnosis • Shortage of MS neurologists • Selection of treatment strategies • Offer timely the entire spectrum of interventions • Patient involvement in the process of decision making • Appropriate monitoring • Risk minimization • Integration of competences • Continuity of the assistance • Contribution to the post-marketing refinement of drug profile Patient population and needs available in well-organized clinical centres only. There are many reasons why we need to promote Accurate monitoring of the treatment response and a worldwide the concept of MS Care Unit, summarized quick shift to an alternative DMT can only be possible in Table 1. if the contact of the patient with the treating neurolo- gist is facilitated by an appropriate assistance setting, Our knowledge of the current treatment of MS across including some recent technical developments, such the European countries is insufficient. The European as remote control by wearable devices. Approval of MS Platform (EMSP) has performed a mapping of 26 new DMTs is usually associated with post-marketing MS registries in Europe in spring 2017 and demon- studies to a better definition of the safety/efficacy pro- strated the currently existing fragmentation in data file. Databases and registries are used to provide this collection and data analysis; in most registries and type of information; however, the quality of these cohorts, the neurologist alone is filling in patient data. tools is essential and again depends on the MS centre organization.12 The quality of health care varies according to European nations, regions and settings (http://www.emsp.org/ MS affects several body systems and patients invaria- wpcontent/uploads/2015/08/MS-in-EU-access.pdf). bly require specialized interdisciplinary support. Both Different studies have been reported focusing on col- patients with relapsing and progressive forms of MS lecting and publishing report data on the quality of the may benefit from a multidisciplinary approach.13 The health care models. Although the studies made the MS neurologist and MS specialist nurse are the key above data increasingly available to the public, more persons in the management of all patients with MS. studies are needed to evaluate patients’ perspective on MS care models. Since the ultimate goal of the multi- Patients with an Expanded Disability Status Scale disciplinary MS Care Unit approach is to increase (EDSS) score of 0–3 are usually managed as outpa- patient satisfaction and quality of life (https://www. tients, and the main mission in these patients is to pro- msif.org/living-with-ms/what-influences-quality-of- vide adequate treatment with disease-modifying life/seven-principles-to-improve-quality-of-life/), core drugs. Mild impairment tends to require specific man- and transversal to the implementation of the above agement of symptoms such as spasticity, urinary dis- approach is the development of an effective framework orders or mild gait/posture disturbances. Fatigue is a to enable people with MS engagement and activation. common complaint even at lower level of disability. Collaboration with external therapists may provide A recent study analysed responses from MS neurolo- encouragement for patients to maintain regular physi- gists in several European countries regarding choice cal activities. of therapy to various clinical situations. The treatment choices varied considerably, even in countries with In patients with greater degree of disability (EDSS the same access to all approved drugs for treatment of score: 3–6), management involves a multidisciplinary relapsing-remitting MS.10 Early treatment and per- team consisting of a physiotherapist, speech therapist, sonalized approach are considered as two fundamen- occupational therapist and neuropsychologist. Close tal steps for the success of DMTs in MS, both are collaboration with external social care services is linked to the definition of various clinical and required to maintain the working ability of the patient laboratory prognostic and predictive factors,7,11 easily and connection to the labour market. 628 journals.sagepub.com/home/msj PS Sorensen, G Giovannoni et al. The major intervention in patients with an EDSS matter most to people with MS and develop research- score >6 remains the management of the many based methods to be used in MS Care decision-mak- symptoms and neurological deficits that are the result ing processes, in data sharing and ultimately in of the progressive clinical phenotype.14 The main regulatory decision-making. goals of physical therapy and rehabilitation are to maintain patients’ autonomy and quality of life at There are currently different ongoing actions of the home and to avoid complications to the MS disease. MS Care Unit. The MS Brain Health initiative is in Management tends to focus largely on physiotherapy the process of doing a Delphi survey to define by con- and occupational therapy aiming primarily on disa- sensus the metrics that the wider MS community need bility compensation, but also towards functional to measure how they are functioning against interna- recovery, so that patients can continue with their tionally defined quality standards. activities. The majority of patients with high EDSS scores require technical aids, such as a wheelchair, Within the frame, the importance of patient activation crutches and ankle foot orthoses, and are reliant on programmes in MS management has been recently considerable support from their carers. Several stud- discussed in a review that reflects the content of the ies consistently indicated the need for MS patients to presentations, audience polling results and discus- have psychosocial support.15,16 sions of the second Pan-European MS Multi- stakeholder Colloquium.19 It was proposed that The proportion of patients using inpatient, outpatient evidence-based care practice guidelines for MS and social care increases with the degree of disease should be developed at the European level (http:// severity. A Swedish study analysed the use of health, www.eurims.org/News/recommendations-on-rehabil- social and informal care services and satisfaction with itation-services-for-persons-with-multiple-sclerosis- care in a population-based sample of people with MS in-europe.html). These guidelines would supplement in Stockholm County.16 During a 3-year period, 92% the European Committee for Treatment and had been in contact with a neurology outpatient clinic. Research in Multiple Sclerosis (ECTRIMS)– Over two-thirds had been in contact with other hospi- European Academy of Neurology (EAN) Clinical tal outpatient departments; the most frequently used Practice Guideline on Pharmacological Management was departments of urology. There were no signifi- of Multiple Sclerosis. cant differences among patients with various disease severities (EDSS) regarding the proportion using out- patient care at departments of neurology. The great The MS Care Unit majority of MS patients used hospital specialist care According to the recent ECTRIMS-EAN guidelines and primary care in parallel, with many departments for treatment of MS, the entire spectrum of disease- and services involved. modifying drugs should only be prescribed in centres where there is an adequate infrastructure to provide At least in some countries, there is still an unmet need proper monitoring of patients, comprehensive assess- for physiotherapy, occupational therapy, equipment ment, and detection of side effects and ability to and aids, together with social, financial and employ- promptly address them.20 ment unmet needs. Overall, the unmet needs were more frequent in patient with progressive MS.17,18 In some countries (e.g. Canada), certain MS drugs are marked ‘XX®’ and should only be prescribed by neu- rologists, who are experienced in the treatment of Ongoing initiatives MS, are knowledgeable of the efficacy and safety pro- The Multiple Sclerosis International Federation file of XX and are able to discuss benefits/risks with (MSIF) movement’s new strategy, 2017–2021, identi- patients. This condition will of course always be fied the potential for good quality, rigorous patient accomplished of a multifocal MS Care Unit.21 data and analysis to speed up discoveries in MS research, inform decisions made by all the health A multidisciplinary MS Care Unit approach can be workers and the other stakeholders involved and ulti- defined as the presence of a group of different special- mately improve outcomes for people living with MS. ists, who work together and with the MS neurologists To meet the above need, in 2017 MSIF launched an and nurses with a formalized diagnostic workup pro- international collaborative initiative, which will cedure, protocols for initiation and follow-up of engage and commit experts from around the world, DMTs and management of complications. The MS and is led by the Italian MS Society, with the overall Care Unit should offer availability of a specific single goal to identify and define the functional domains that contact neurologist and nurse, who can provide journals.sagepub.com/home/msj 629 Multiple Sclerosis Journal 25(5) information, support and advice to the individual MS should have a variety of experimental therapies at dis- patients. This is imperative as a recent study on the posal of patients with therapeutic refractory MS. This effect of organizational features on patient satisfac- approach requires specially trained MS neurologists tion with care in Italian MS centres clearly showed and MS nurses.21 that patient satisfaction was inversely associated with hospital size, probably because larger hospital may The neuropsychologist is essential for the assessment have failed in building an individualized relationship of neuropsychological problems that in MS patients between patients and the MS neurologist and nurse can be classified into three broad categories: cogni- and tailoring the communication of information.22 tion, mood disorders and behavioural symptoms. Irrespective of the severity of the deficits, it is impor- The premises of the MS Care Unit should comprise an tant to diagnose all cases of cognitive impairment and outpatient clinic with consulting/examining rooms, to monitor its evolution at regular neuropsychological rooms for procedures, for example, lumbar puncture assessment by a neuropsychologist or an occupational and filling of intrathecal baclofen pumps, and a dedi- therapist supervised by a neuropsychologist (e.g. at cated quiet room or area, free from distraction or the start of and during immunotherapy, and in the interruption, where patients receive information about event of worsening). Cognitive rehabilitation may their disease. Ideally, the MS Care Units should have keep the mildly cognitive MS patient able to maintain their own infusion centre and other spaces dedicated working and the more progressed patients able to stay to other professionals. In addition, the MS Care Unit in their own homes. should have inpatient facilities or have access to admission of patients to a department of neurology In patients with moderate or more pronounced disabil- with well-designed care for MS patients. ity, the mainstay of treatment for both weakness and spasticity is physical therapy and exercise.23 Hence, physiotherapists constitute an essential group in the Organization of the MS Care Unit multidisciplinary MS Care Unit, and they should have The core of the MS Care Unit is the patients and a strong collaboration with physiotherapists in reha- would in addition to MS neurologists and nurses bilitation clinics and in the primary health sector. comprise (at least three of) neuropsychologists, clinical psychologists, physiotherapists, occupa- Occupational therapists may be an integrated part of tional therapists, speech therapists, social workers the multidisciplinary MS Care Unit or can be associ- and secretaries, and the multidisciplinary MS clinic ated to the unit. The majority of patients with high should offer specialist services in dietary matters, EDSS scores require technical aids in order to main- and in the treatment of spasticity, incontinence and tain independence and ability of staying in their own pain. Some of these services may, however, be pro- homes. Usually, the occupational therapist works in vided by a MS neurologist or MS nurse in the MS close collaboration with the physiotherapist and the Care Unit with special education and interest neuropsychologist. (Figure 1). Patients with speech difficulties may benefit greatly In patients with relapsing forms of MS, the correct when their deficits are managed by a speech therapist diagnosis and DMT should be secured by the neurolo- who usually is an external collaborator in smaller gists in the MS Care Unit, who have special interest in clinics. MS, and who use the majority of their clinical work- ing hours with treatment of MS patients. Together The whole neurorehabilitation team in the multidisci- with the MS specialist nurses, these neurologists con- plinary MS Care Unit liaises regularly with the patient’s stitute the backbone of the health care persons in the external therapist to encourage and facilitate mainte- MS Care Unit. nance of physical and social activities. Collaboration with external neurorehabilitation institutions is impor- The multidisciplinary MS Care Unit should collabo- tant in relation to patients who are in need of longer rate with a pharmacist with special knowledge of MS inpatient rehabilitation stay. therapies and be able to offer the full range of approved DMTs for relapsing and progressive MS The clinical psychologist may facilitate the develop- and to tailor the treatment to the single patient’s need. ment of effective communication and relationship In addition to personalized therapy using drugs between the clinician and the patient, which may sig- licenced for the treatment of MS, the MS Care Unit nificantly increase MS patients’ satisfaction with 630 journals.sagepub.com/home/msj PS Sorensen, G Giovannoni et al. Figure 1. Minimum requirements for a multidisciplinary MS Care Unit. healthcare. In relation to adaption to the new life situ- physician is much involved, the team in the multidis- ation after having the diagnosis of MS and when dete- ciplinary MS Care Unit should keep a close collabo- rioration of health occurs, the accessibility to ration with the patients’ general practitioner. psychological support and crisis therapy is essential. Effectively, the National Institute for Health and Care In many countries, practicing neurologists are respon- Excellence (NICE) guidelines recognize that psycho- sible for management of the majority of people with logical support should be routine in the management MS. The multidisciplinary MS Care Unit should offer of patients with MS (NICE 2003 and NICE 2014).24,25 collaboration on second opinion of patients with diag- nostic challenges and assist in the treatment of patients The medical social worker or counsellor is important with aggressive MS course and of patients not offering advice on social security matters to MS responding to conventional therapies. patients at different stages of the disease course and is mediator of social care and home care services deliv- The fully developed integrated multidisciplinary MS ered by the public social services departments. These Care Unit encompasses staff members with many dif- services include home help, personal assistants, trans- ferent skills, including occupational therapist, speech portation, physiotherapy and technical aids such as a therapist, dietician, medical social worker or counsel- crutches and other walking aids, wheelchair and mini lor, clinical psychologist, laboratory technician and crossers. specialists in treatment of spasticity, incontinence and pain, who may be members of the multidisciplinary The personnel of multidisciplinary MS Care Unit team, may be MS neurologists or MS nurses, with spe- should be able to offer expertise in treatment of spas- cial expertise or may be external experts collaborating ticity, incontinence and pain and to give advice on closely with the staff of the MS Care Unit (Figure 2). dietary aspects, conveyed by specially educated MS neurologists or MS nurses with special interest in the Some neighbouring specialities are extremely impor- topic, and for matters that are not mastered by the tant collaborators such as neuro-radiologists, neuro- personnel in the MS Care Unit, connection and ophthalmologists and urologist. collaboration with external specialists should be established. A reliable and expert neuro-radiological service is of paramount importance for the diagnostic workup of The role of the general practitioner in the manage- patients suspected of MS and for monitoring the dis- ment of MS patients vary considerably between coun- ease evolution and response to DMT as well as adverse tries in Europe, and in countries in which the family effects to therapy. Several large multidisciplinary MS journals.sagepub.com/home/msj 631 Multiple Sclerosis Journal 25(5) Figure 2. Organization of the fully developed integrated multidisciplinary MS Care Unit. Care Units have special MS MRI facilities closely col- administration, a multidisciplinary approach is laborating with or embedded in the unit. needed, including collaboration with neurosurgeons. Collaboration with neuro-otologist is important in the Tremor can be one of the most disabling symptoms of treatment of patients with vertigo or balance prob- MS that in many cases do not respond satisfactorily to lems, and neurophysiologists are often responsible for pharmacotherapy and, hence, requires either the use performance of visual, somatosensory and motor- of assistive devices or surgical intervention such as evoked potentials that are a part of the diagnostic deep brain stimulation. The decision for particular workup in some patients. therapeutic measures may be reached by a team that includes expert neurologists, neurosurgeon, psychia- Psychiatric comorbidities are common in MS patients trist and psychologist. and also require special care.26 Every phase of MS can lead to initial denial and later acceptance phases that For treatment of spasticity complications such as can be handled appropriately by psychotherapy. Many joint contractures, hip dislocations, scoliosis and of these symptoms can be managed by the personal of deformed extremities, collaboration with orthopae- the MS Care Unit, but in some cases, the choice of dics is required, as well as for treatment of fractures antidepressant or initiation of neuroleptics will need caused by the falls that frequently occurs in disabled discussion with psychiatrists. MS patients. Collaboration with other specialities, for example, Other surgical interventions are required in refractory internal medicine specialists, endocrinologist, rheu- and more severe cases of bladder dysfunction where matologists, specialists in infectious diseases and car- enterocystoplasty (Bricker) and urinary diversion diologists is necessary, not only to treat complications become alternative treatment modalities, and in cases of the MS disease but also to manage comorbidities. of severe swallowing disorders where gastrostomy may be needed. Spasticity is in generally handled by the neurologists in the MS Care Unit with pharmacological treatment The fully developed integrated multidisciplinary MS and botulinum toxin injected locally, but when severe Care Unit will usually be connected to a clinical trial spasticity in the legs requires intrathecal baclofen unit and a MS research unit with laboratory facilities. 632 journals.sagepub.com/home/msj PS Sorensen, G Giovannoni et al. Patients’ perspective MS nurses or therapists and thereby release neurolo- A multidisciplinary clinical approach that integrates gist time to patient contact. NICE has recommended patient-care (diagnosis, treatment and follow-up) and that care for people with MS should comprise a coor- rehabilitation activities (including neuropsychologi- dinated multidisciplinary approach (NICE 2003).24 cal and social support) would enhance the efficacy of Management of people with MS should involve pro- therapy (all aspects including compliance and adher- fessionals who can best meet the needs of the person ence and not only limited to effectiveness) and pro- with MS and who have expertise in managing MS vide better patient overall satisfaction.27 The including consultant neurologists, MS nurses, physio- availability of a specific single contact neurologist therapists and occupational therapists, speech and lan- and nurse, who can provide information, support and guage therapists, psychologists, dieticians, social care advice to the individual MS patient, is a major advan- and continence specialists, and general practitioners. tage over a regular outpatient clinic. Patients may be exposed to a variety of experimental therapies, which However, it is not realistic that every patient is man- may not be available to office-based neurologists. aged in integrated MS care centres all over Europe, and the approach has to be balanced with clinical Accompanying acceptance of the need to integrate practice. Hence, in many countries, although it should patient perspectives is an increase in the demand for be encouraged to treat as many people with MS in MS research-based methods and tools to measure the Care Units, collaboration between the MS Care Units effectiveness of incorporating patient input into the and practicing neurologist needs to be established MS care models and, ultimately, its impact on patients’ with the MS Care Unit offering the function as refer- health and quality of life.28 Given the plethora of ence centres. functional domains affected in patients with MS, a multidisciplinary care team, such as the one described Uygunoglu et al.30 have reviewed the reasons for pro- in this paper, is needed in order to improve MS moting integrated multidisciplinary clinics focusing patients’ quality of life.29 primarily on patients with progressive forms of MS. They concluded that the optimum care for patients Rehabilitation is essential in the management of the with MS requires a multispecialist work force which MS patient during the patient journey along the course should include not only expert neurologists but also of MS.14 The rehabilitation physician could be physical medicine and rehabilitation physicians, included in the core team of the MS Care Unit and be physiotherapists, speech therapists, neuro-urologists, working together in a team with physiotherapist, psychiatrists and psychologists, sleep medicine spe- speech therapist and occupational therapist that could cialists, specialist MS nurses, social workers, occupa- deliver appropriate neurorehabilitation treatment. tional therapists and optional others. However, Papeix et al.31 found in a small randomized Why are multidisciplinary MS Care Units controlled trial that an integrated multidisciplinary important? approach was not superior to usual multidisciplinary DMT has become increasingly complex and com- care in promoting quality of life as measured by the prises a wide range of drugs with different mechanism MS impact scale-29. They suggested that in order to of action and adverse effects that need meticulous enhance the efficacy and to provide better patient sat- monitoring.7,8 The establishment of multidisciplinary isfaction, the MS nurse specialist should, as part of MS Care Units would facilitate timely and correct their work, be involved in ensuring that the chain of treatment and increase the safety for patients treated multidisciplinary assessments and interventions is with DMTs. The use of the entire therapeutic arma- organized systematically and that all patients can mentarium seamlessly and correctly requires expert access the necessary experts.32 neurologists and MS nurses. The presence of several MS expert neurologists in the How should the efficacy of the MS Care Unit enables ad hoc real-time conferences multidisciplinary MS Care Unit approach be about patients presenting with diagnostic or therapeu- measured? tic challenges. As the MS Care Unit approach advances, there remains a need to identify, define and capture the In almost all countries, there is a shortage of MS neu- return of investment across key stakeholders, such as rologists and multidisciplinary MS Care Units offer payers, hospital systems and providers, as well as the possibility of transfer of tasks from neurologists to returns experienced by patients. All stakeholders will journals.sagepub.com/home/msj 633 Multiple Sclerosis Journal 25(5) Table 2. Measures of effects of the establishment of multidisciplinary MS Care Units. Short-term measures • More uniform choice of therapies in line with published international treatment guidelines • Better quality of life measured on a recognized quality-of-life scale or visual analogue scale • More seamless care of people with multiple sclerosis • Regularly repeated data analysis of a minimal set of PRO(M)s, which will be agreed by and implemented into all willing MS registries globally • Regularly repeated analysis of a European minimal data set of RWE data (beside the PROs) which will be agreed by and implemented into all willing MS registries Europe wide Long-term measures • Improved therapeutic effectiveness of disease-modifying therapy – measured using big data from several MS registries • Increased safety for patients on disease-modifying therapy – measured by prospectively collected safety data reported to EMA by European MS registries • Reducing claims for disability benefit PRO(M): patient-reported outcome (measure); RWE: real-world evidence; EMA: European Medicines Agency. look for short-term returns on their investment of on a recognized quality-of-life scale or visual analogue money, time and effort in order to maintain the scale should indicate a high patient satisfaction. momentum. The MS Care Unit approach will apply a prospective model engaging stakeholders in defining It is obvious that the terms of performance of different metrics to measure its impact (co-accountability MS Care Units vary across regions and countries. model), rather than using a single performance assess- Hence, the criteria that can define the performance of ment system (top down accountability approach). good quality of an MS Care Unit will need to be Within this frame, in measuring the impact of MS defined according to local conditions. Care Unit, it will be fundamental to consider patients and their needs and perspectives as key stakeholders Establishment of MS Care Units may even be cost- throughout the entire measurement process. The effective for the society, reducing claims for disability measures of effects of the establishment of multidisci- benefit by maintaining the working ability of people plinary MS Care Units are given in Table 2. with MS and reducing the costs of home help and cus- todial care by keeping people with MS resourceful. One of the first successes of the initiative will be the This would, however, due to the diverse course of MS establishment of multidisciplinary MS Care Units in and complexity of management be difficult to docu- many countries, which could be documented in a sur- ment on the short run and will require socio-economic vey conducted by the European Charcot Foundation, studies with long-term observation. and for which to develop the relevant co-accountability model to measure the impact on patients and society. Declaration of Conflicting Interests The author(s) declared the following potential con- In Denmark, the initiative has resulted in political flicts of interest with respect to the research, author- plans to establish multidisciplinary MS Centres. ship and/or publication of this article: P.S.S. has received personal compensation for serving on scien- It is, however, difficult to provide a universal measure tific advisory boards, steering committees or of the efficacy of the multidisciplinary MS Care Unit independent data monitoring boards for Biogen, because of the considerable variations in treatment Merck, Novartis, TEVA, GlaxoSmithKline, MedDay choices in specific patient situations shown to exist Pharmaceuticals, Genzyme, Celgene and Forward across different countries,10 but a more uniform choice Pharma and has received speaker honoraria from of treatments according to published international Biogen, Merck, Teva, Genzyme and Novartis. His guidelines after establishment of MS Care Units, shown department has received research support from in a similar survey, would confirm beneficial effect. Biogen, Merck, TEVA, Novartis, Sanofi-Aventis/ Genzyme, RoFAR and Roche. G.G. has received The ultimate goal of the multidisciplinary MS Care compensation for serving as a consultant or speaker Unit approach is to increase patient satisfaction and for, or has received research support from AbbVie, quality of life. Hence, a better quality of life measured Actelion, Atara Bio, Biogen, Canbex, Celgene, Sanofi 634 journals.sagepub.com/home/msj PS Sorensen, G Giovannoni et al. Genzyme, Genentech, GlaxoSmithKline, Merck- 6. Miller RG, Jackson CE, Kasarskis EJ, et al. Practice Serono, Novartis, Roche, Synthon BV and Teva. X.M. parameter update: The care of the patient with has received speaking honoraria and travel expenses amyotrophic lateral sclerosis: Multidisciplinary care, for participation in scientific meetings, has been a symptom management, and cognitive/behavioral impairment (an evidence-based review): Report of steering committee member of clinical trials or par- the Quality Standards Subcommittee of the American ticipated in advisory boards of clinical trials in the Academy of Neurology. Neurology 2009; 73: past years with Actelion, Almirall, Bayer, Biogen, 1227–1233. Celgene, Genzyme, Merck, Novartis, Oryzon Genomics, Roche, Sanofi Genzyme and Teva 7. Comi G, Radaelli M and Soelberg Sorensen P. Pharmaceutical. C.T. has, in his capacity as consultant Evolving concepts in the treatment of relapsing multiple sclerosis. Lancet 2017; 389: 1347–1356. for EU health affairs, received consultancy fees by Gruenenthal and by PharmaGenesis. In his capacity 8. Soelberg Sorensen P. Safety concerns and risk as Director External Affairs of the European MS management of multiple sclerosis therapies. Acta Platform, he served in advisory boards and/or work- Neurol Scand 2017; 136: 168–186. shops by Biogen, Merck, Novartis, Sanofi Genzyme, 9. Thompson AJ, Toosy AT and Ciccarelli O. Servier and Takeda. His employer, the European MS Pharmacological management of symptoms in Platform, has received unrestricted project grants multiple sclerosis: Current approaches and future from Actelion, Almirall, Bayer, Biogen, icometrix, directions. Lancet Neurol 2010; 9: 1182–1199. MedDay, Merck, Mylan, Novartis, Roche, Sanofi 10. Fernandez O, Delvecchio M, Edan G, et al. Survey Genzyme, SCA, Servier, Synthon, Terumo and Teva. of diagnostic and treatment practices for multiple P.Z. has no conflict of interest to declare. G.C. has sclerosis in Europe. 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