Multiple Sclerosis Neurologists Research Articles

Super resolution using sparse sampling at portable ultra-low field MR

Ultra-low field (ULF) magnetic resonance imaging (MRI) holds the potential to make MRI more accessible, given its cost-effectiveness, reduced power requirements, and portability. However, signal-to-noise ratio (SNR) drops with field strength, necessitating imaging with lower resolution and longer scan times. This study introduces a novel Fourier-based Super Resolution (FouSR) approach, designed to enhance the resolution of ULF MRI images with minimal increase in total scan time. FouSR combines spatial frequencies from two orthogonal ULF images of anisotropic resolution to create an isotropic T2-weighted fluid-attenuated inversion recovery (FLAIR) image. We hypothesized that FouSR could effectively recover information from under-sampled slice directions, thereby improving the delineation of multiple sclerosis (MS) lesions and other significant anatomical features. Importantly, the FouSR algorithm can be implemented on the scanner with changes to the k-space trajectory. Paired ULF (Hyperfine SWOOP, 0.064 tesla) and high field (Siemens, Skyra, 3 Tesla) FLAIR scans were collected on the same day from a phantom and a cohort of 10 participants with MS or suspected MS (6 female; mean ± SD age: 44.1 ± 4.1). ULF scans were acquired along both coronal and axial planes, featuring an in-plane resolution of 1.7 mm × 1.7 mm with a slice thickness of 5 mm. FouSR was evaluated against registered ULF coronal and axial scans, their average (ULF average) and a gold standard SR (ANTs SR). FouSR exhibited higher SNR (47.96 ± 12.6) compared to ULF coronal (36.7 ± 12.2) and higher lesion conspicuity (0.12 ± 0.06) compared to ULF axial (0.13 ± 0.07) but did not exhibit any significant differences contrast-to-noise-ratio (CNR) compared to other methods in patient scans. However, FouSR demonstrated superior image sharpness (0.025 ± 0.0040) compared to all other techniques (ULF coronal 0.021 ± 0.0037, q = 5.9, p-adj. = 0.011; ULF axial 0.018 ± 0.0026, q = 11.1, p-adj. = 0.0001; ULF average 0.019 ± 0.0034, q = 24.2, p-adj. < 0.0001) and higher lesion sharpness (−0.97 ± 0.31) when compared to the ULF average (−1.02 ± 0.37, t(543) = −10.174, p = <0.0001). Average blinded qualitative assessment by three experienced MS neurologists showed no significant difference in WML and sulci or gyri visualization between FouSR and other methods. FouSR can, in principle, be implemented on the scanner to produce clinically useful FLAIR images at higher resolution on the fly, providing a valuable tool for visualizing lesions and other anatomical structures in MS.

Prospective study validating a multidimensional treatment decision score predicting the 24-month outcome in untreated patients with clinically isolated syndrome and early relapsing–remitting multiple sclerosis, the ProVal-MS study

IntroductionIn Multiple Sclerosis (MS), patients´ characteristics and (bio)markers that reliably predict the individual disease prognosis at disease onset are lacking. Cohort studies allow a close follow-up of MS histories and a thorough phenotyping of patients. Therefore, a multicenter cohort study was initiated to implement a wide spectrum of data and (bio)markers in newly diagnosed patients.MethodsProVal-MS (Prospective study to validate a multidimensional decision score that predicts treatment outcome at 24 months in untreated patients with clinically isolated syndrome or early Relapsing–Remitting-MS) is a prospective cohort study in patients with clinically isolated syndrome (CIS) or Relapsing–Remitting (RR)-MS (McDonald 2017 criteria), diagnosed within the last two years, conducted at five academic centers in Southern Germany. The collection of clinical, laboratory, imaging, and paraclinical data as well as biosamples is harmonized across centers. The primary goal is to validate (discrimination and calibration) the previously published DIFUTURE MS-Treatment Decision score (MS-TDS). The score supports clinical decision-making regarding the options of early (within 6 months after study baseline) platform medication (Interferon beta, glatiramer acetate, dimethyl/diroximel fumarate, teriflunomide), or no immediate treatment (> 6 months after baseline) of patients with early RR-MS and CIS by predicting the probability of new or enlarging lesions in cerebral magnetic resonance images (MRIs) between 6 and 24 months. Further objectives are refining the MS-TDS score and providing data to identify new markers reflecting disease course and severity. The project also provides a technical evaluation of the ProVal-MS cohort within the IT-infrastructure of the DIFUTURE consortium (Data Integration for Future Medicine) and assesses the efficacy of the data sharing techniques developed.PerspectiveClinical cohorts provide the infrastructure to discover and to validate relevant disease-specific findings. A successful validation of the MS-TDS will add a new clinical decision tool to the armamentarium of practicing MS neurologists from which newly diagnosed MS patients may take advantage.Trial registration ProVal-MS has been registered in the German Clinical Trials Register, `Deutsches Register Klinischer Studien` (DRKS)—ID: DRKS00014034, date of registration: 21 December 2018; https://drks.de/search/en/trial/DRKS00014034

INFORMATION WANTS AND INFORMATION SEEKING ACTIONS FROM PORTUGUESE NEUROLOGIST

Background: Medical professionals nowadays must be well-versed in the most recent, scientifically confirmed facts on illness diagnosis, treatment, and patient care. Despite the fact that there are an increasing number and variety of information sources available to physicians, many questions remain concerning the authenticity, quality, and usefulness of medical information. With the goal of improving current medical information delivery, new methodologies are needed to assess doctors’ real-life demands. Objective: The goal of this study was to explore the information requirements and seeking behaviour of Portuguese’s neurologists treating patients with multiple sclerosis (MS) and migraine. Methods: An exploratory mixed methods (quantitative and qualitative) investigation of 15 consecutive days was conducted. It was necessary to recruit a total of 50 neurologists (25 MS experts and 25 migraine specialists). An instant messaging programme built for this study was used to gather data. Personal interviews were conducted by computer at each information-seeking session, which included semi structured interviews and closed-ended questions. Content analysis was used to identify emergent themes from the mobile app interactions and physician enquiries. Results: A total of 36/20, or 71 percent, of the questions posed by neurologists were linked to treatment management and pharmacological information, followed by diagnostic techniques and procedures. Online resources were preferred by doctors (48/50, 96 percent) over offline alternatives (24/50, 47 percent) in a quantitative study. In 33% of information-seeking activities, a multi-channel strategy was used, which included using both online and offline resources to address the same demand. Neurologists were more likely to use internet resources than offline ones (F=1.7; P=.01) to get information. Compared to migraine neurologists, MS specialists were 53% more likely to participate in a single information-seeking event (risk ratio 1.54; 95% CI 1.12 to 2.05). More than two-thirds of MS specialists (28 percent [7/25] vs. 10 percent [2/25], P=.06) were interested in patient-related material, whereas migraine physicians (85% [21/25] vs. 60% [15/25], P=.05) were more inclined to seek information on treatment management. Both online and offline information searching was more difficult for migraine experts (F=12.5, P=.01) and offline channels were utilised less often (30 percent [8/25] versus 60 percent of information-seeking events, P=.02). To get information from various sources, both migraine and MS experts reported lower satisfaction rates (single source vs multiple sources P=.003). Conclusion: Portuguese MS and migraine neurologists are described in great depth in this research, including their real-life search activity as well as educational requirements and information sources they use. Neurologist information demands and information-seeking behaviour are influenced by their professional field. Identifying the temporal and context-specific demands of physicians is essential for designing a successful medical information strategy, according to these results.

Optimizing the "Time to pregnancy" in women with multiple sclerosis: the OPTIMUS Delphi survey.

The debate on how to manage women affected by multiple sclerosis (MS) during reproductive age is still open, as is the issue of fertility in such patients. Main issue regard the identification of the optimal window for pregnancy and how to deal with medical therapy before and during conception. The aim of this Delphi consensus was to collect the opinions of a multidisciplinary group, involving reproductive medicine specialists and neurologists with experience in the management of multiple sclerosis women with reproductive desire. Four experts plus scientific coordinators developed a questionnaire distributed online to 10 neurologists and later discussed the responses and amended a list of statements. The statements were then distributed via an online survey to 23 neurologists (comprising the first 10), who voted on their level of agreement/disagreement with each statement. Consensus was achieved if agreement or disagreement with a statement exceeded 66%. Twenty-one statements reached consensus after two rounds of voting, leading to the following main recommendations: (1) Fertility evaluation should be suggested to wMS, in case of the need to shorten time to pregnancy and before treatment switch in women on DMTs contraindicated in pregnancy, particularly in case of highly active disease and age > 35 years. (2) ART should not be discouraged in wMS, but the use of DMTs until pregnancy confirmation should be suggested; ART may be considered in order to reduce time to pregnancy in MS women with a reduced ovarian reserve and/or age > 35 years, but in case of an expected poor ART prognosis and the need for more than one ART cycle, a switch to a high-efficacy DMD before ART should be offered. (3) Oocyte cryopreservation may be considered in women with reduced ovarian reserve, with unpredictable time to complete diagnostic workup and achieve disease control; a risk/cost-benefit analysis must be performed in women >35 years, considering the diminished ovarian reserve. This consensus will help MS neurologists to support family planning in wMS, respecting MS therapeutic needs while also taking into account the safety and impact of advancing age on fertility.

Treatment of older patients with multiple sclerosis: Results of an International Delphi Survey.

People over age 50-55 have historically been excluded from randomized clinical trials for multiple sclerosis (MS). However, more than half of those living with an MS diagnosis are over 55. Explore the unique considerations of treating older people with MS (PwMS) using an iterative and structured Delphi-based assessment to gather expert opinions. Eight MS neurologists with an interest in older PwMS developed a 2-round survey. Survey respondents were qualified neurologists with ≥3 years' experience, personally responsible for treatment decisions, and treating ≥20 patients per month, of whom ≥10% were ≥50 years old. Consensus was defined as ≥75% agreement on questions with categorical responses or as a mean score ≥4 on questions with numerical responses. In Survey 1, 224 neurologists responded; 180 of these completed Survey 2. Limited consensus was reached with varying levels of agreement on several topics including identification and assessment of older patients; factors relating to treatment decisions including immunosenescence and comorbidities; considerations for high-efficacy treatments; de-escalation or discontinuation of treatment; effects of COVID-19; and unmet needs for treating this population. The results of this Delphi process highlight the need for targeted studies to create guidance for the care of older PwMS.

Quality of online materials in MS (P3-3.002)

<h3>Objective:</h3> To evaluate the quality of the online educational resources for MS. <h3>Background:</h3> Multiple sclerosis (MS) is a potentially disabling autoimmune disease of the central nervous system is usually diagnosed at 20–50 years. Once diagnosed, people with MS may learn about their disease from their providers, social media and online education materials. <h3>Design/Methods:</h3> The study include100 Google searches of multiple sclerosis webpages written by MS experts, neurologists, and other writers. We used the Flescher-Kincaid score to evaluate readability. Webpages that address more than two categories (MS etiology/pathology, symptomatology, diagnosis, treatment) were characterized comprehensively; otherwise, were focused. In addition, we examined the number of articles with advertisements, and citations, if any. <h3>Results:</h3> MS experts wrote 30% of the websites, while neurologists wrote 22% and others 48%. About 21% of the websites written by MS experts were focused. The mean F-K score was 50.8 (SD15.6) with a 95% confidence interval of {47.7–53.9} and a median of 52. These scores reflect a reading level ranging from high school to college. Neurologists and others wrote 5% of the webpages with higher F-K indexes. More than half (57%) of the webpages had advertisements, and those with more advertisements were more focused and not comprehensive. Webpages that were focused were more cited, while those with advertisements were less cited. <h3>Conclusions:</h3> The results showed that online educational webpages provide both focused and comprehensive information for MS. However, the high readability index may lead to difficulty understanding the material by people with education lower than high school. <b>Disclosure:</b> Mr. Albacha has nothing to disclose. Mr. Elkhooly has nothing to disclose. Dr. Bernitsas has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Janssen@Janssen. Dr. Bernitsas has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Biogen. The institution of Dr. Bernitsas has received research support from Roche/Genentech.

Monitoring response to disease-modifying treatment in multiple sclerosis

BackgroundStandard criteria for defining suboptimal response to disease-modifying treatment (DMT) in patients with multiple sclerosis (MS) are lacking. Decision-making on how and when DMTs should be switched is challenging. The objective of the study was to identify areas of agreement on which and when specific assessments should be conducted to monitor patient response to DMT. MethodsA survey comprising 54 statements in nine categories was drafted by eight MS experts after gathering insight during four previous meetings of a total of 25 MS experts. For each statement, results were classified as being in general agreement (≥66.6% responded “Strongly agree” or “Agree”) or general disagreement (≥66.6% responded “Strongly disagree” or “Disagree”). ResultsThe survey was sent to 790 MS neurologists, 151 of whom participated (19%), and 98 (65%) completed it. General agreement and disagreement were reached for 45 and 2 statements, respectively, on different aspects of MS management, including treatment response, MS relapses, progression, disease activity measured by imaging and biomarkers, neuropsychological evaluation, brain volume loss, DMT switches due to lack of response and applicability to clinical practice. ConclusionsThis study aims to provide guidance for the early identification of suboptimal response to DMT and for improving MS patient monitoring and treatment.

Developing evidence-based guidelines for the safety of symptomatic drugs in multiple sclerosis during pregnancy and breastfeeding: A systematic review and Delphi consensus

Background Multiple sclerosis (MS) is frequently diagnosed in people of reproductive age, many of whom will become pregnant following diagnosis. Although many women report an improvement in symptoms and relapses during pregnancy, symptoms such as fatigue and spasticity are commonly reported and can worsen. Prescribing medications during pregnancy and breastfeeding presents unique challenges and guidance on the use of symptomatic therapies is limited. Objectives This paper aims to provide a consensus on the current evidence base to facilitate informed decision-making and optimise pre-conception counselling. Methods A list of most commonly prescribed medications for symptom management in MS was created using pregnancy and MS-related READ codes in the Welsh GP Dataset, followed by a review by MS neurologists. Results A final list of 24 medications was generated for review. Searches were performed on each medication, and evidence graded using standardised criteria. Evidence-based recommendations were developed and distributed to experts in the field and revised according to feedback using modified Delphi criteria. Conclusions Our guidelines provide evidence-based recommendations on the safety of symptomatic therapies during pregnancy and breastfeeding for general practitioners and specialist teams working with people with MS who are hoping to embark on pregnancy or are currently pregnant. Individual risk–benefit ratios should be considered during pre-conception counselling to optimise symptom burden and minimise harm to both parent and child.

Autologous haematopoietic stem cell transplantation for multiple sclerosis: a position paper and registry outline.

While substantial progress has been made in the development of disease-modifying medications for multiple sclerosis (MS), a high percentage of treated patients still show progression and persistent inflammatory activity. Autologous haematopoietic stem cell transplantation (AHSCT) aims at eliminating a pathogenic immune repertoire through intense short-term immunosuppression that enables subsequent regeneration of a new and healthy immune system to re-establish immune tolerance for a long period of time. A number of mostly open-label, uncontrolled studies conducted over the past 20 years collected about 4000 cases. They uniformly reported high efficacy of AHSCT in controlling MS inflammatory disease activity, more markedly beneficial in relapsing-remitting MS. Immunological studies provided evidence for qualitative immune resetting following AHSCT. These data and improved safety profiles of transplantation procedures spurred interest in using AHSCT as a treatment option for MS. To develop expert consensus recommendations on AHSCT in Germany and outline a registry study project. An open call among MS neurologists as well as among experts in stem cell transplantation in Germany started in December 2021 to join a series of virtual meetings. We provide a consensus-based opinion paper authored by 25 experts on the up-to-date optimal use of AHSCT in managing MS based on the Swiss criteria. Current data indicate that patients who are most likely to benefit from AHSCT have relapsing-remitting MS and are young, ambulatory and have high disease activity. Treatment data with AHSCT will be collected within the German REgistry Cohort of autologous haematopoietic stem CeLl trAnsplantation In MS (RECLAIM). Further clinical trials, including registry-based analyses, are urgently needed to better define the patient characteristics, efficacy and safety profile of AHSCT compared with other high-efficacy therapies and to optimally position it as a treatment option in different MS disease stages.

Real-world operation of multiple sclerosis centres in Central-Eastern European countries covering 107 million inhabitants

BackgroundIn 2018 multiple sclerosis (MS) care unit (MSCU) recommendations were defined. Nevertheless, the information on MS care, and whether MS centres fulfil the international recommendation is limited. Thus our objectives were to assess whether centres meet the MSCU recommendations and gain a comprehensive overview of MS care in Central-Eastern European countries. MethodsA self-report questionnaire assessing aspects of the MSCU recommendations, disease-modifying therapy (DMT) and registry use and the patient number was assembled and sent to nine Central-Eastern European countries. Furthermore, one Danish and one German centre were contacted as a reference. ResultsIn 9/9 countries, MS care was pursued in centres by MS neurologists and MS nurses. In Austria and the Czech Republic, management of MS was conducted under strict regulations displaying a referral centre system, fundamentally similar to but independent of the MSCU criteria. Several centres fulfilled all aspects of the MSCU criteria, while others had similar insufficiencies consisting of a speech therapist, continence, pain and spasticity specialist, neuro-ophthalmologist, and oto-neurologist. In 9/9 countries, DMTs were reimbursed. However, some centres did not provide every available DMT. A national registry was available in 4/9 countries with mandatory registry use only in Austria and the Czech Republic. ConclusionIn countries where MSCU recommendations are not fulfilled, a strictly regulated centre system similar to the Austrian and Czech model with a registry-based quality control might ensure appropriate care for people with MS.

Gender disparities in multiple sclerosis research and leadership: A Colombian perspective.

The neurological academic field is an illustrative example of persistent gender-related disparities reflected in compensation, funding, leadership, promotion, publishing, and recognition. Several studies indicate that neurology is one of the most underrepresented specialties with female physicians as first authors, but also has one of the highest gender payment gaps. Neglecting the role of women in academic leadership positions hinders the visibility and recognition of research and leadership in multiple sclerosis (MS). Increasing diversity within academia has positive effects, such as widening focus and expanding the plurality of research outputs. The gender gap and visibility of female MS clinicians and researchers remains an unexplored research topic in our country despite the rising number of female neurologists. This study aims to establish the gender distribution between researchers and clinical neurologists in multiple sclerosis in Colombia and raise awareness about gender disparities in this area. We applied a cross-sectional survey study of Colombian neurologists and neurology residents currently members of the Colombian Neurology Association. Mean and standard deviation (SD) were used for quantitative variables and frequency for qualitative variables. To evaluate the influence of gender, logarithmic regression was used. Data were analyzed in SPSS 26. A total of 201 participants agreed to complete the survey, most of whom were female (n = 135, 67.2%). All the Colombian regions were represented in the survey. Of those surveyed, 31.5% (n = 64) had an interest in demyelinating diseases and MS, of which 46.8% (n = 30) were female. Of the women with MS training, only 50% (n =5) had more than three publications as the first author of a scientific article compared to men (n = 5, 83%). After adjusting the number of publications by gender, there were no significant differences between men and women (median 2.0[2, 1.21] vs. 2[2, 0.5], p = 0.904). However, only 16.6% (n = 5) of women had a visible academic, leadership, or teaching position compared with men 75.7% (n = 25). When adjusting the salary income by gender, we found a statistically significant difference between women and men (median 2.0 [5, 1.47] vs. 3 [5, 1.65], p = 0.006). Women in MS earned between USD 2,500 and 3,800 per month; while men earned between USD 3,800 to 5,070. Despite a higher number of female neurologists trained in MS in Colombia, our data suggest considerable differences and gender gaps with regard to diverse opportunities at the academic, salary promotion, leadership, teaching, and recognition levels between male and female MS neurologists.

Neurologists’ views on patient reported outcomes in multiple sclerosis care

BackgroundThe value that patient reported outcomes (PROs) can bring to the clinical encounter is increasingly being recognized. Within the field of Multiple Sclerosis (MS), a number of activities have been initiated internationally with the aim of integrating PROs in MS care. Integration of PROs in MS care will, among other things, require MS neurologists' acceptance of PROs. This qualitative study aimed to explore MS specialized neurologists’ view on the potentials and barriers for the use of PROs in the clinical setting. MethodsEight neurologists specialized in MS participated in a series of individual in-depth semi-structured interviews. Interviews were audio-recorded and transcribed. A thematic analysis was conducted using a reflexive thematic approach to identify meaning units and themes emerging from the interviews. The analysis focused on barriers and potentials for PROs that relate to the specific characteristics of MS. ResultsThree main themes emerged from the data. “The role of PROs in describing the patient's situation” describes how informants perceived MS as a complex disease, and in this context, PROs can bring forth new or otherwise hidden information, but they may also blur the picture. The theme “The validity of PROs reported by MS patients may be questionable” describes how impairments caused by MS, such as cognitive and physical disabilities, were identified as risk factors that could cause unreliable self-reported outcome measures within this patient group. Finally, the theme “Involving the patient” regards how the clinical conversation was viewed as the most important source of patient reported information, but at the same time PROs carry the potential to enhance shared decision making. ConclusionThis study indicates that, according to MS neurologists, integration of PROs in MS clinical practice, though possibly valuable, is not without challenges. Possible benefits of PROs include the ability to bring forth otherwise hidden information on the patient's health status and the enhancement of shared decision making. Barriers include difficulties in capturing the full situation of the patient via PROs due to the complexity of MS as well as the issue of various MS-related impairments compromising the validity of PROs reported by MS patients.

Autologous Hematopoietic Stem Cell Transplantation for Multiple Sclerosis, the Ottawa Protocol.

Autologous hematopoietic stem cell transplantation (aHSCT) is increasingly used to treat patients with highly active multiple sclerosis (MS) refractory to disease-modifying therapy. Briefly, cyclophosphamide and filgrastim are used to mobilize autologous hematopoietic stem cells (HSC) into the circulation. HSC are harvested by leukapheresis, purified using a CD34 immunomagnetic selection process, and cryopreserved. Busulphan, cyclophosphamide, and rabbit anti-thymocyte globulin are used to destroy the patient's autoreactive immune system, followed by infusion of the previously collected HSC, which reconstitute a naïve and self-tolerant immune system. Many MS patients experience durable remissions with no evidence of new disease activity following aHSCT. Treatment-related toxicity is rare, but potentially life-threatening complications necessitate appropriate patient selection by MS neurologists and HSCT physicians. AHSCT must be performed with a highly trained multidisciplinary team expert to minimize morbidity and mortality. We present the current aHSCT procedure for an MS indication at The Ottawa Hospital, developed from our program's 20-year experience. © 2022 Wiley Periodicals LLC. Basic Protocol 1: Candidate selection Basic Protocol 2: Autologous hematopoietic stem cell mobilization, collection, purification, and cryopreservation Basic Protocol 3: Autologous hematopoietic stem cell transplantation Basic Protocol 4: Supportive care following recovery from aHSCT (Beyond 100 days) Basic Protocol 5: Ongoing evaluation of multiple sclerosis.

Hemostasis Components as Therapeutic Targets in Autoimmune Demyelination

Several studies in both multiple sclerosis (MS) and experimental autoimmune encephalitis (EAE) have shed light on the vascular mechanisms contributing to MS pathogenesis. The dysregulation of the hemostatic pathways revealed to play a pivotal role. Here, we review the numerous findings providing evidence on the involvement of hemostasis components in MS pathogenesis to highlight why they might be considered potential therapeutic targets in the disease. A literature search for articles from January 1950 to September 2021 was conducted in PubMed and Scopus. A consistent body of evidence supports the pro-inflammatory activity of activated platelets in MS pathogenesis and the beneficial effect of aspirin administration on the EAE clinical course. Further, neuropathological findings in subjects with MS and experimental studies in EAE have revealed dysregulation of coagulation/fibrinolysis system in autoimmune demyelination. Fibrin deposition in the central nervous system and its interaction with the CD11b receptor on microglia cells seems to drive neuroinflammation and autoimmune demyelination. However, at present, few and controversial clinical data are available on the implementation of drugs targeting fibrin deposition in MS therapy. In conclusion, targeting platelet activation and receptors for fibrin(ogen) deserve further research to hopefully purpose new drugs in the pharmacologic paraphernalia of MS neurologists.

Effect of virtual height exposure on postural control

The value that patient reported outcomes (PROs) can bring to the clinical encounter is increasingly being recognized. Within the field of Multiple Sclerosis (MS), a number of activities have been initiated internationally with the aim of integrating PROs in MS care. Integration of PROs in MS care will, among other things, require MS neurologists' acceptance of PROs. This qualitative study aimed to explore MS specialized neurologists’ view on the potentials and barriers for the use of PROs in the clinical setting.Eight neurologists specialized in MS participated in a series of individual in-depth semi-structured interviews. Interviews were audio-recorded and transcribed. A thematic analysis was conducted using a reflexive thematic approach to identify meaning units and themes emerging from the interviews. The analysis focused on barriers and potentials for PROs that relate to the specific characteristics of MS.Three main themes emerged from the data. “The role of PROs in describing the patient's situation” describes how informants perceived MS as a complex disease, and in this context, PROs can bring forth new or otherwise hidden information, but they may also blur the picture. The theme “The validity of PROs reported by MS patients may be questionable” describes how impairments caused by MS, such as cognitive and physical disabilities, were identified as risk factors that could cause unreliable self-reported outcome measures within this patient group. Finally, the theme “Involving the patient” regards how the clinical conversation was viewed as the most important source of patient reported information, but at the same time PROs carry the potential to enhance shared decision making.This study indicates that, according to MS neurologists, integration of PROs in MS clinical practice, though possibly valuable, is not without challenges. Possible benefits of PROs include the ability to bring forth otherwise hidden information on the patient's health status and the enhancement of shared decision making. Barriers include difficulties in capturing the full situation of the patient via PROs due to the complexity of MS as well as the issue of various MS-related impairments compromising the validity of PROs reported by MS patients.

Improving smoking cessation support for people with multiple sclerosis: A qualitative analysis of clinicians’ views and current practice

Introduction Smoking is a key modifiable risk factor in multiple sclerosis (MS). MS healthcare providers have a central role informing people of the deleterious effects of smoking on MS progression and promote smoking cessation, yet there is limited information about smoking cessation and support provided by these providers. This study aimed to gain an understanding of MS healthcare providers current practices, barriers and facilitators related to providing smoking cessation support for people with MS.Methods A total of 13 MS nurses and 6 neurologists working in public and private MS clinics across Australia were recruited through professional networks and MS organisations. Telephone interviews were conducted, transcribed and evaluated using framework analysis.Results MS nurses and neurologists reported that they routinely assess smoking status of people with MS at initial appointments and less regularly also at follow-up appointments. Clinicians considered it important to provide information about smoking impact on MS health outcomes and advise to cease smoking, but the content and delivery varies. Beyond this, some clinicians offer referral for smoking cessation support, while others stated this was not their responsibility, especially in light of competing priorities. Many were unsure about referral pathways and options, requiring more information, training and resources.Conclusion Results of this research indicate that there is potential to improve support for MS clinicians to promote smoking cessation among people with MS. Smoking cessation support may include tailored patient resources, clinician training and stronger collaboration with smoking cessation service providers.

UK variance in DMT advice and prescribing in MS and pregnancy: Impact of the UK consensus on pregnancy in multiple sclerosis ABN guidelines

BackgroundThe ABN Multiple Sclerosis (MS) pregnancy guidelines set out to combine best current evidence with expert consensus. They were developed to provide a practical framework to support neurologists when counselling women with MS regarding pregnancy. A key objective was to reduce variation in practice and increase clarity for patients in an area of uncertainty. MethodsIn order to assess the impact of these guidelines on practice, and assess ongoing areas of need, we conducted an online survey about MS and pregnancy. This survey was cascaded via email to UK neurologists between December 2019 and January 2020. Individuals completed this questionnaire anonymously. ResultsThe majority of respondents reported changing their prescribing practice with interferon-beta preparations (IFN-B) and natalizumab. The ABN guidelines were the most commonly cited reason for change (76%). However, there was considerable variation in advice regarding the use of both DMTs in pregnancy. ConclusionsThere is substantial variation in advice given to women with MS around pregnancy, and this is reflected in prescribing practice by UK Neurologists. Awareness of national guidelines is good, and these have driven change in a majority of MS neurologists. There remains the need to continually update and communicate these guidelines, particularly as recommendations evolve with increasing evidence.

Modeling the Cost-Utility of Treatment Sequences for Multiple Sclerosis

ObjectivesMost patients with multiple sclerosis (MS) switch between disease-modifying therapies (DMTs) during their lifetime. Our aim was to develop an MS cost-utility model that takes treatment switching into account to provide a more realistic estimate of treatment benefit than previous models that assume lifetime use of 1 DMT. MethodsA treatment sequence model using a microsimulation framework with a lifetime time horizon and a societal perspective was developed in R. Clinical plausibility and decision rules for switching were defined in consultation with Dutch MS neurologists. The ability of DMTs to prevent relapses and delay disease progression was modeled by applying DMT-specific estimates derived from a network meta-analysis of randomized controlled trials to natural history data. A total of 2 treatment strategies were compared: a first-line DMT sequence (peginterferon-glatiramer-teriflunomide-interferon-beta-dimethyl fumarate) and an escalation DMT sequence (peginterferon-glatiramer-ocrelizumab-natalizumab-alemtuzumab). Scenario analyses explored impact of alternative sources of natural history data, societal versus healthcare perspective, and condition-specific versus generic utilities. Predicted short-term switches (<5 years) were externally validated with Dutch claims data on DMT use. ResultsShort-term switches predicted by the model compared well with Dutch claims data. Transition from relapsing-remitting MS to secondary progressive MS was delayed by the escalation sequence (24.7 vs 20.3 years on first-line sequence). Model results were sensitive to utility values and medical resource consumption was a large driver of uncertainty. ConclusionsThis microsimulation model overcomes the limitation of previous models by modeling treatment sequences. Because it better reflects clinical reality, it facilitates incorporating cost-utility information in clinical guidelines.

Physician Compensation in the United States – Through the Lens of the MS Neurologist

Purpose of review: To explore the elements that are typically considered when determining physician compensation in the United States and to examine if the compensation of neurologists with expertise in multiple sclerosis (MS) care is commensurate with that for other neurological specialists and medical specialists that also employ complex therapies, e.g., oncology. Recent findings: The complexity in the diagnosis and management of MS requires increasing specialization. Additionally, changing models for the delivery of MS care has resulted in the MS neurologist generating significant contribution margins. In fact, the revenue to compensation ratio for the MS neurologist may be significantly higher than that of any other discipline in neuroscience service lines. However, while the contribution margin is often a key justification of compensation of interventional and intensive care practitioners in neuroscience service lines, it is generally not considered in the MS neurologist's compensation. Compensation models for MS neurologists typically depend heavily on the absolute number of relative value units associated with evaluation and management (E&M) codes making other fields of neurology financially more attractive to trainees. Summary: In considering the shortage of MS specialists, the demands of their discipline, and the revenue to compensation ratios, the MS neurologist is significantly undercompensated relative to other neurological specialists and to physicians in other disciplines. Compensating the MS neurologist appropriately and supporting the necessary infrastructure for MS care will likely attract more trainees to this discipline and help reverse the current scarcity of MS neurologists in the United States.

Patients and neurologists have different perceptions of multiple sclerosis symptoms, care and challenges

Background: Basic steps in the management of patients with Multiple Sclerosis (MS), such as good patient understanding of the disease and active participation in its management are extremely important, as they directly influence treatment adherence and success. Therefore, this study aimed to evaluate the perception of MS patients and neurologists pertaining to the most common disease symptoms, disabilities that impact on quality of life, and patient concerns and difficulties during medical visits, as information that can be used to improve the doctor-patient relationship. Methods: A cross-sectional study involving two groups: the first composed of neurologists and the second of patients. Participants of the first group were selected by a Steering Committee (15 predetermined neurologists representing each region of Brazil and specialized in MS and neuroimmunological disorders, who also assumed the role of creating the survey and questionnaire). Participants of the second group were selected following dissemination of a questionnaire on the AME's social networks (Amigos Múltiplos pela Esclerose, a non-governmental organization to support patients with MS). Questions about sociodemographic data, disease impact on quality of life, symptoms perception, and concerns and issues regarding disease care were put to both groups. Results: A total of 317 patients and 182 neurologists answered the questionnaires. Significant divergences were found between the perceptions of patients and neurologists in relation to orientation and information given during medical appointments, and also regarding patient participation in treatment and therapy choice. Considering the topic assessing impact on quality of life, more than 70% of neurologists perceived that autonomy to work and travel, and future planning were aspects that most affected patient lives, however, almost 50% of patients reported that disease monitoring did not affect their life in any way. Analysis of data regarding MS symptoms revealed neurologists to consider physical symptoms, such as ambulation issues, imbalance, falls and urinary incontinence, to be those most interfering with patient quality of life, whereas patients considered non-physical symptoms, such as fatigue, pain, cognitive and memory problems to be more significant. Patients with primary progressive MS complained more about ambulation issues, imbalance and falls (p<0.05), when compared to patients with other disease phenotypes. Conclusion: Significant differences in disease perception were found in this study. While neurologists tended to overestimate the consequences and symptoms of the disease, for most patients, the disease impact on activities did not appear to be as significant, with more complaints regarding non-physical symptoms. Although neurologists described involving patients in treatment decisions and providing them with appropriate orientation during medical appointments, the opposite was reported by patients. These results may help to improve treatment adherence and disease outcomes by redefining the doctor-patient relationship.