Multiple Sclerosis Clinicians Research Articles

Management of multiple sclerosis in older adults: review of current evidence and future perspectives.

The prevalence of multiple sclerosis (MS) and aging MS patients is increasing worldwide. There is a need to better understand this MS sub-population, which historically is underrepresented in the literature. This narrative review examines the evolving demographics, disease course, and treatments for older adults with MS (OAMS) to address current knowledge gaps and highlight areas critical for future research. OAMS populations require special consideration by clinicians. Older individuals have different care needs than individuals with adult onset MS who are mid-life or younger. Comorbidities, an aging immune system, increasing neurodegeneration, decreasing neurologic reserve, changing benefit/risk relationship for disease modifying therapies (DMTs), and wellness require special attention to provide holistic comprehensive care. Active areas of research include potential cessation of DMTs and novel disease targets. This review highlights both the current knowledge and information gaps in the literature that are critical to understanding and properly managing OAMS. The aims are to inform MS clinicians in their current practice, as well as inspire future studies which are critical to providing quality and evidence-based care for OAMS.

Views of Specialist Clinicians and People With Multiple Sclerosis on Upper Limb Impairment and the Potential Role of Virtual Reality in the Rehabilitation of the Upper Limb in Multiple Sclerosis: Focus Group Study.

Finding enjoyable and effective long-term approaches to rehabilitation for improving the upper limb (UL) function of people with multiple sclerosis (MS) is challenging. Using virtual reality (VR) could be a solution to this challenge; however, there is a lack of reporting on the views of people with MS and clinicians on VR-based approaches and recommendations for games for rehabilitation. This study aims to identify common UL problems and their related current therapeutic approaches for people with MS, and to explore the opinions of people with MS and specialist clinicians on VR and obtain suggestions for the development and design of VR games. Separate focus groups were conducted with people with MS, recruited through the MS Society UK's research network, and clinicians, recruited through the MS Trust Therapists in MS network. A total of 10 people with MS (2 focus groups) and 8 clinicians (5 physiotherapists, 2 occupational therapists, and 1 MS nurse in 2 focus groups) were involved. The focus groups were recorded and transcriptions were analyzed using theme-based content analysis. People with MS commonly reported that their UL problems interfered with activities of daily living and resulted in the loss of meaningful hobbies such as writing. Many people with MS neglected UL exercise and found strategies for adapting to the UL impairments. Similarly, clinicians stated UL rehabilitation was neglected within their service and that it was challenging to find interesting treatment strategies. VR was suggested by both participant groups as a solution, as it was convenient for people with MS to access and it could provide a more engaging and disguised approach to exercise. There were shared concerns with cybersickness and disengagement with using VR approaches. Both groups agreed games should be meaningful and adaptable for users but suggested different VR activities, with clinicians suggesting games directly reflecting activities of daily living and people with MS suggesting more abstract activities. VR was well received by both people with MS and clinicians for UL rehabilitation. Recommendations were made for the development of VR rehabilitation games which are personalized and customizable for the varying abilities of people with MS.

A Closed-Loop Digital Health Tool to Improve Depression Care in Multiple Sclerosis: Iterative Design and Cross-Sectional Pilot Randomized Controlled Trial and its Impact on Depression Care.

People living with multiple sclerosis (MS) face a higher likelihood of being diagnosed with a depressive disorder than the general population. Although many low-cost screening tools and evidence-based interventions exist, depression in people living with MS is underreported, underascertained by clinicians, and undertreated. This study aims to design a closed-loop tool to improve depression care for these patients. It would support regular depression screening, tie into the point of care, and support shared decision-making and comprehensive follow-up. After an initial development phase, this study involved a proof-of-concept pilot randomized controlled trial (RCT) validation phase and a detailed human-centered design (HCD) phase. During the initial development phase, the technological infrastructure of a clinician-facing point-of-care clinical dashboard for MS management (BRIDGE) was leveraged to incorporate features that would support depression screening and comprehensive care (Care Technology to Ascertain, Treat, and Engage the Community to Heal Depression in people living with MS [MS CATCH]). This linked a patient survey, in-basket messages, and a clinician dashboard. During the pilot RCT phase, a convenience sample of 50 adults with MS was recruited from a single MS center with 9-item Patient Health Questionnaire scores of 5-19 (mild to moderately severe depression). During the routine MS visit, their clinicians were either asked or not to use MS CATCH to review their scores and care outcomes were collected. During the HCD phase, the MS CATCH components were iteratively modified based on feedback from stakeholders: people living with MS, MS clinicians, and interprofessional experts. MS CATCH links 3 features designed to support mood reporting and ascertainment, comprehensive evidence-based management, and clinician and patient self-management behaviors likely to lead to sustained depression relief. In the pilot RCT (n=50 visits), visits in which the clinician was randomized to use MS CATCH had more notes documenting a discussion of depressive symptoms than those in which MS CATCH was not used (75% vs 34.6%; χ21=8.2; P=.004). During the HCD phase, 45 people living with MS, clinicians, and other experts participated in the design and refinement. The final testing round included 20 people living with MS and 10 clinicians including 5 not affiliated with our health system. Most scoring targets for likeability and usability, including perceived ease of use and perceived effectiveness, were met. Net Promoter Scale was 50 for patients and 40 for clinicians. Created with extensive stakeholder feedback, MS CATCH is a closed-loop system aimed to increase communication about depression between people living with MS and their clinicians, and ultimately improve depression care. The pilot findings showed evidence of enhanced communication. Stakeholders also advised on trial design features of a full year long Department of Defense-funded feasibility and efficacy trial, which is now underway. ClinicalTrials.gov NCT05865405; http://tinyurl.com/4zkvru9x.

Addressing the Needs of Multiple Sclerosis Caregivers From Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol.

Caregivers of individuals with multiple sclerosis (MS) have emotional, instrumental, wellness, and social needs beginning with their partner's diagnosis and continuing throughout the disease course. Their feelings of grief, anxiety, depression, isolation, and fatigue, as well as the limited time they have for their own self-care, impact their health and quality of life; yet caregiver needs often go unrecognized by health care providers, extended family, friends, and employers. This project creates an online caregiver resource that will benefit caregivers, enable MS clinicians to offer caregivers the support and resources they need in a timely and time-efficient way, and thereby benefit individuals with MS as well. We assembled a caregiver advisory board to help us identify caregiver needs and corresponding resources starting from diagnosis and continuing throughout the disease course. We then surveyed the larger MS caregiver community for validation and refinement of the resource list. Each of the identified resources was then vetted for quality and accuracy by the authors. The caregiver resources are now ready to be put into a dedicated website that will allow easy access to information, support, tools, and resources as needed. The process of creating this caregiver resource confirmed longstanding findings in the literature about the caregiving role. The resource that has been created will benefit caregivers of individuals with MS, their loved ones, and MS clinicians.

Implementing Shared Decision-Making for Multiple Sclerosis: The MS-SUPPORT Tool

BackgroundDisease modifying therapies (DMTs) offer opportunities to improve the course of multiple sclerosis (MS), but decisions about treatment are difficult. People with multiple sclerosis (pwMS) want more involvement in decisions about DMTs, but new approaches are needed to support shared decision-making (SDM) because of the number of treatment options and the range of outcomes affected by treatment. We designed a patient-centered tool, MS-SUPPORT, to facilitate SDM for pwMS. We sought to evaluate the feasibility and impact of MS-SUPPORT on decisions about disease modifying treatments (DMTs), SDM processes, and quality-of-life. MethodsThis multisite randomized controlled trial compared the SDM intervention (MS-SUPPORT) to control (usual care) over a 12-month period. English-speaking adults with relapsing MS were eligible if they had an upcoming MS appointment and an email address. To evaluate clinician perspectives, participants’ MS clinicians were invited to participate. Patients were referred between November 11, 2019 and October 23, 2020 by their MS clinician or a patient advocacy organization (the Multiple Sclerosis Association of America). MS-SUPPORT is an online, interactive, evidence-based decision aid that was co-created with pwMS. It clarifies patient treatment goals and values and provides tailored information about MS, DMTs, and adherence. Viewed by patients before their clinic appointment, MS-SUPPORT generates a personalized summary of the patient's treatment goals and preferences, adherence, DMT use, and clinical situation to share with their MS clinician. Outcomes (DMT utilization, adherence, quality-of-life, and SDM) were assessed at enrollment, post-MS-SUPPORT, post-appointment, and quarterly for 1 year. ResultsParticipants included 501 adults with MS from across the USA (84.6% female, 83% white) and 34 of their MS clinicians (47% neurologists, 41% Nurse Practitioners, 12% Physician Assistants). Among the 203 patients who completed MS-SUPPORT, most (88.2%) reported they would recommend it to others and that it helped them talk to their doctor (85.2%), understand their options (82.3%) and the importance of taking DMTs as prescribed (82.3%). Among non-users of DMTs at baseline, the probability ratio of current DMT use consistently trended higher over one-year follow-up in the MS-SUPPORT group (1.30 [0.86-1.96]), as did the cumulative probability of starting a DMT within 6-months, with shorter time-to-start (46 vs 90 days, p=0.24). Among the 222 responses from 34 participating clinicians, more clinicians in the MS-SUPPORT group (vs control) trended towards recommending their patient start a DMT (9 of 108 (8%) vs 5 of 109 (5%), respectively, p=0.26). Adherence (no missed doses) to daily-dosed DMTs was higher in the MS-SUPPORT group (81.25% vs 56.41%, p=.026). Fewer patients forgot their doses (p=.046). The MS-SUPPORT group (vs control) reported 1.7 fewer days/month of poor mental health (p=0.02). ConclusionsMS-SUPPORT was strongly endorsed by patients and is feasible to use in clinical settings. MS-SUPPORT increased the short-term probability of taking and adhering to a DMT, and improved long-term mental health. Study limitations include selection bias, response bias, social desirability bias, and recall bias. Exploring approaches to reinforcement and monitoring its implementation in real-world settings should provide further insights into the value and utility of this new SDM tool.

What Is the True Impact of Cognitive Impairment for People Living with Multiple Sclerosis? A Commentary of Symposium Discussions at the 2020 European Charcot Foundation.

Multiple sclerosis (MS) is a chronic, neurodegenerative, inflammatory condition usually associated with physical disability. Clinical care has been skewed toward the physical manifestations of the disease, yet a range of silent symptoms occurs including the cognitive aspects of MS. In a 2018 meeting of MS in the 21st Century (MS21), an international steering committee comprising both specialists and patient experts recognised that the 'invisible symptoms' of MS pose a significant challenge to patient engagement. These findings prompted the European Charcot Foundation (ECF) MS21 symposium (2020), where a panel consisting of two leading MS clinicians and an MS patient expert (who were all members of the MS21 steering group) gathered to discuss the impact of cognitive impairment on the everyday lives of people with MS.The perspectives and experiences of the panellists are summarised in this paper. The key points raised were that (1) the cognitive manifestations of MS are under-recognised and have consequently been undermanaged from a clinical perspective and (2) cognitive impairment due to MS has a significant impact upon daily living and patient quality of life. During discussions about how these challenges can be addressed, the panel advocated for an improvement in education about cognitive symptoms for people living with MS and healthcare professionals (HCPs) to raise awareness about this aspect of MS. Furthermore, the panel emphasised the importance of open and proactive communication between HCPs and their patients with MS about cognitive symptoms to reduce the stigma attached to these symptoms. In the opinion of the panel, future clinical trials which include cognitive outcomes as key endpoints are needed. Reflecting this point, cognitive impairment in MS care also needs to be treated as an important disease symptom, as is done with physical symptoms of the disease. Implementing early and routine cognition screening and promoting measures for protecting cognition to people living with MS, such as cognitive rehabilitation and a 'brain-healthy' lifestyle, are actions which can drive forward the recognition of cognitive impairment as a care priority.If prioritised as highly as physical disability in both the MS care and clinical drug development setting, and proactively discussed in conversations between HCPs and patients with MS, the 'invisibility' of cognitive impairment in MS can be lifted and a better quality of life can be promoted for people living with MS.

Patient and Clinician Perspectives of Physical Therapy for Walking Difficulties in Multiple Sclerosis.

Gait speed is frequently the primary efficacy endpoint in clinical trials of interventions targeting mobility in people with multiple sclerosis (MS). However, it is unclear whether increased gait speed is a meaningful outcome for people living with MS. The purpose of this study was to identify the most important aspects of mobility for people with MS and physical therapists and to explore how patients and clinicians perceive whether physical therapy has been effective. Forty-six people with MS and 23 physical therapy clinicians participated in a focus group, one-on-one interview, or electronic survey. The focus group and interview data were transcribed and coded to identify themes. Free-text survey responses were also coded, and multiple-choice options were analyzed for frequency. Among people with MS, falls and difficulties getting out into the community were identified as highly important mobility limitations. Clinicians also identified falls and safety as a priority. Walking speed was infrequently described as a problem, and although gait speed is often measured by clinicians, improving gait speed is rarely a treatment goal. Despite their emphasis on safety, clinicians lacked certainty about how to objectively measure improvements in safety. People with MS evaluated physical therapy effectiveness based on the ease by which they can do things and acknowledged that "not getting worse" is a positive outcome. Clinicians evaluated effectiveness based on the amount of change in objective outcome measures and by patient and caregiver reports of improved function. These findings indicate that gait speed is not of major importance to people with MS or physical therapy clinicians. People with MS want to be able to walk further and without an assistive device, and they want to avoid falls. Clinicians want to maximize safety while improving functional ability. Clinicians and patients may differ in their expected outcomes from physical therapy.

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.

Smoking habits, awareness and support needs for cessation among people with multiple sclerosis in Australia: findings from an online survey

ObjectivesTo assess smoking habits, nicotine use, exposure to passive smoking, awareness of associated harms, and experiences with and preferences for smoking cessation support among people with multiple sclerosis (MS).DesignOnline survey,...

Extension and Evaluation of the PROMIS Sexual Function and Satisfaction Measures for Use in Adults Living With Multiple Sclerosis

Sexual dysfunction is a common symptom of multiple sclerosis (MS). Clinically meaningful and psychometrically sound measures of sexual function validated in people with MS are necessary to identify people with MS who experience problems with sexual function. To evaluate the Patient-Reported Outcomes Measurement Information System (PROMIS) Sexual Function and Satisfaction (SexFS) v2.0 measure in people with MS and to extend the PROMIS SexFS Brief and Full Profiles to include additional aspects of sexual function relevant to people living with MS. A convenience sample of MS clinicians and sexually active individuals with MS ranked relevance of 26 items that listed specific factors that interfere with sexual function. Rankings were used to select items to include in the modified SexFS for Multiple Sclerosis (SexFS-MS) profiles. Sex-FS Brief and Full profiles along with the top 22 ranked interfering factor items underwent cognitive interviews (CI) to assess whether the items were understandable and meaningful. The SexFS as originally published functioned well in people with MS after minor modifications. Twelve MS clinicians and 26 people with MS ranked items. The 10 highest ranked questions about factors that interfere with sexual function most relevant to people with MS were added to the SexFS-MS Brief profiles and 18 to the Full profiles. Ten men and 12 women with MS participated in CIs and found most items to be clear and meaningful. However, important changes were made to the profile instructions, some response sets, and to some items to improve clarity and function. New items to assess numbness and reasons why sexually active people choose at times not to engage in sexual activity were added. Brief and Full profiles are freely available and are recommended for research and clinical practice that include people with MS. This study is the first to provide validity evidence for the PROMIS SexFS in people living with MS. Though the PROMIS SexFS was tested in people who identify as lesbian, gay, or bisexual, only individuals who identified as heterosexual participated in this study. Results may not represent views of people with MS who identify as other sexual orientations who may have different concerns and priorities related to sexual function. This study extended the PROMIS SexFS Brief and Full profiles to create the SexFS-MS by adding items that measure most relevant issues related to sexual function in individuals living with MS. Amtmann D, Bamer AM, Salem R, etal. Extension and Evaluation of the PROMIS Sexual Function and Satisfaction Measures for Use in Adults Living With Multiple Sclerosis. J Sex Med 2022;19:719-728.

Aquatic exercise for persons with MS: Patient-reported preferences, obstacles and recommendations

BackgroundMany persons with multiple sclerosis (MS) have difficulties engaging in traditional land-based physical activity due to heat sensitivity and physical disability. Aquatic exercise may be a suitable alternative for these individuals, preventing overheating and enabling a range of movements that were otherwise difficult on land. The objective of the current study was to understand why some persons with MS prefer aquatic exercise while others prefer non-aquatic exercise, which will inform recommendations. MethodsA total of 179 persons with MS completed a brief online survey (∼10 min) about their exercise routines between October 2020 and April 2021. ResultsFifty-sex percent of respondents reported that they only engaged in non-aquatic exercise (i.e., land-based activities such as jogging), followed by 36% of respondents who reported that they engaged in both aquatic and non-aquatic exercise, and 7% of respondents who participated in aquatic exercise only. The most frequently reported barriers for aquatic exercise were lack of access to pools and its associated expense. Among individuals who had tried aquatic exercise, aquatic exercise was preferred over non-aquatic exercise, and 100% reported that they would recommend aquatic exercise to other persons with MS. Finally, the majority of respondents reported exercising less during the coronavirus disease 2019 (COVID-19) pandemic. ConclusionAquatic exercise is well liked among persons with MS who have tried it; however, it may not be feasible for economically disadvantaged persons with MS. Local charities and health organizations may consider financially sponsoring aquatic exercise programs to encourage participation in physical activity for the MS population. Due to the negative impact of the pandemic on exercise routines, MS clinicians should encourage their patients to resume their exercise routines once the pandemic subsides.

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.

Managing Cognitive Dysfunction in Multiple Sclerosis: A Snapshot of Changes in Screening, Assessment, and Treatment Practices.

Cognitive dysfunction is prevalent in multiple sclerosis (MS) and can have a negative effect on several aspects of the daily lives of individuals with MS. In 2010, members of the Consortium of Multiple Sclerosis Centers (CMSC) were surveyed to understand MS clinicians' screening, assessment, and treatment practices for cognitive problems. Given the advancements made in the field in the past decade, it was deemed time to reevaluate how cognitive dysfunction is managed in the clinical setting. An online questionnaire was completed by 56 CMSC members. They were asked to describe their clinical practices, procedures for screening and further evaluation, and treatment recommendations for cognitive dysfunction. Participants were also asked whether their practice had changed in terms of the number of cognitive screenings, prescriptions for cognitive problems, and referrals for neuropsychological assessment and cognitive remediation in the past 5 years to allow for clinicians who had not been in practice for 10 years. Participants reported an increase in the number of cognitive screenings and referrals for neuropsychological assessments and cognitive remediation during the past 5 years. Compared with 2010, participants endorsed greater use of person-administered screening measures, such as the Symbol Digit Modalities Test, and fewer prescriptions for medications to improve cognitive functioning. Clinical practices are becoming more in line with the literature, with increased use of cognitive screening and remediation. Continued attention to cognitive problems will be an ongoing important component of MS-related care.

Barriers and motivators for tobacco smoking cessation in people with multiple sclerosis

IntroductionSmoking is a key modifiable risk factor for health outcomes of people with multiple sclerosis (MS). Little evidence exists on whether the information and support needs of people with MS who smoke are met. This study aimed to explore knowledge, attitudes and beliefs about smoking and quitting, and quitting support needs in Australian people with MS. MethodsCurrent and recent smokers were recruited for phone interviews through social media and newsletters. Interview data were analysed in NVivo using framework analysis. ResultsWe interviewed 25 people with MS (20 current and five recent smokers). Many participants had little knowledge about the risks of smoking on MS progression. Some reported perceived benefits from smoking on MS symptoms, while others perceived smoking worsening their symptoms. Similarly, quitting was believed to have health benefits, but concerns about withdrawal symptoms and the impact on MS symptoms and relapses were common. Participants reported ambivalence discussing smoking with clinicians; some wanting more information and support, while also feeling shame or guilt. Many participants were asked about their smoking status by MS clinicians, however, the provision of evidence-based information, and referrals to quitting support services was very infrequent. General practitioners were often found helpful and supportive, but participants gave more weight to quit advice from MS clinicians. ConclusionOur results are the first to indicate that smoking cessation needs of Australian people with MS are not met. These findings should be confirmed in a larger sample, but there is potential to investigate whether implementing routine provision of brief advice in MS care, as a coordinated effort between MS researchers, practitioners, consumer advocates and behavioural intervention services, may meet these needs. Further, developing targeted resources and training quit counsellors to provide appropriate information and support specific to people with MS may improve smoking cessation success in people with MS.

How the COVID-19 Pandemic has changed multiple sclerosis clinical practice: Results of a nationwide provider survey

BackgroundThe COVID-19 crisis has created unanticipated changes in health care delivery for people living with multiple sclerosis (MS). The pandemic's rapid evolution has resulted in a knowledge gap in how COVID-19 has affected MS clinical practice. Our objective was to understand how the COVID-19 pandemic has affected clinical practice patterns in a nationwide cohort of MS clinicians across the United States. MethodsIn collaboration with the National Multiple Sclerosis Society (NMSS), we developed a 28-item SurveyMonkeyTM electronic questionnaire exploring MS specialists’ perceptions of how COVID-19 has altered how they prescribe MS disease-modifying therapies (DMTs), provide telehealth and other services, and view issues affecting their own well-being including re-deployment to the front lines of COVID-19 care and availability of personal protective equipment (PPE). NMSS staff sent a recruitment email containing the electronic survey link to 188 clinicians who serve on regional NMSS Healthcare Provider Councils across the US, 86 (45.7%) of whom were MS specialist physicians. ResultsEighty-six of 188 potential respondents (45.7%) from 32 US states completed the survey including 45 physicians (41 neurologists, 3 physiatrists and 1 family physician), 18 rehabilitation therapists, 7 psychologists, 6 nurse practitioners, 4 social workers, 2 physician assistants, 2 nurses and 2 health professionals from other disciplines. More than 80% of all respondents working on-site in a health care setting believed they had adequate PPE. More than 41% were able to distance safely from others at work. Nearly 10% of respondents reported they had been re-deployed to the front lines of COVID-19 patient care, and an additional 16.9% anticipated being re-deployed. Among the MS specialist physician subgroup, nearly one-third reported using telemedicine to provide over 75% of their clinical care. Only 16.7% believed COVID-19 had not changed how they prescribe DMTs. Therapies prescribed more often during the pandemic included β-IFNs (28.6% of prescribers), natalizumab (23.8%), glatiramer acetate (21.4%) and teriflunomide (19%). DMTs prescribed less often included alemtuzumab (64.3% of prescribers), cladribine (54.8%), ocrelizumab and rituximab (50%), and fingolimod and siponimod (40.5%). For at least some of their patients during the pandemic, some MS specialists reported suspending certain DMTs including alemtuzumab (21.4% of prescribers), ocrelizumab and rituximab (16.7%) and cladribine (11.9%). Others reported extending DMT dosing intervals for natalizumab (38.1%), fingolimod and siponimod (11.9%). ConclusionsIn this nationwide survey, MS specialist physicians and other clinicians serving on regional NMSS Healthcare Provider Councils across the US reported profound changes in how they are delivering MS care during the COVID-19 pandemic.

An electronic, unsupervised patient-reported Expanded Disability Status Scale for multiple sclerosis

Background: In persons with multiple sclerosis (MS), the Expanded Disability Status Scale (EDSS) is the criterion standard for assessing disability, but its in-person nature constrains patient participation in research and clinical assessments. Objective: The aim of this study was to develop and validate a scalable, electronic, unsupervised patient-reported EDSS (ePR-EDSS) that would capture MS-related disability across the spectrum of severity. Methods: We enrolled 136 adult MS patients, split into a preliminary testing Cohort 1 (n = 50), and a validation Cohort 2 (n = 86), which was evenly distributed across EDSS groups. Each patient completed an ePR-EDSS either immediately before or after a MS clinician’s Neurostatus EDSS evaluation. Results: In Cohort 2, mean age was 50.6 years (range = 26–80) and median EDSS was 3.5 (interquartile range (IQR) = [1.5, 5.5]). The ePR-EDSS and EDSS agreed within 1-point for 86% of examinations; kappa for agreement within 1-point was 0.85 (p < 0.001). The correlation coefficient between the two measures was 0.91 (<0.001). Discussion: The ePR-EDSS was highly correlated with EDSS, with good agreement even at lower EDSS levels. For clinical care, the ePR-EDSS could enable the longitudinal monitoring of a patient’s disability. For research, it provides a valid and rapid measure across the entire spectrum of disability and permits broader participation with fewer in-person assessments.

Initial User Testing of Decision Aids for Multiple Sclerosis Disease-Modifying Therapies.

Disease-modifying therapies (DMTs) are the cornerstone of multiple sclerosis (MS) treatment. DMT treatment is a preference-sensitive decision in which shared decision making is indicated. We used qualitative methods to explore usability of MS decision aids in people aged 18 to 70 years diagnosed with MS. Semistructured interviews aimed to assess patients' overall reaction to using the decision aids. This included specific aspects of the user experience to improve readability, format, content, and patient opinions about whether the integration of the decision aids into visits with MS clinicians would be feasible and assist with making better DMT selections. Twenty-three interviews were completed with eligible patients with MS aged 18 to 70 years to improve readability. Using thematic analysis, 5 themes emerged from the analysis including decision aids are easy and understandable, include cost, prioritize side effects and tests, increase font size, and have a simpler injectable grid. We also identified areas for improvement including formatting, side effects of DMT options, transparency of data sources, research, and development. Overall findings suggest that the decision aids are usable, easy to understand, and helpful to facilitate shared decision making for DMT selection. This work will help guide further modifications to the prototype MS decision aids before publication and can inform the growing body of knowledge regarding the development of high-quality decision aids.

Information Needs and Information-Seeking Behavior of Italian Neurologists: Exploratory Mixed Methods Study.

BackgroundCurrent medical professions involve an extensive knowledge of the latest validated scientific data to implement disease diagnosis, therapeutic strategies, and patient care. Although clinicians can refer to a growing number and type of information sources to keep current with new scientific achievements, there are still various concerns about medical information validity, quality, and applicability into clinical practice. Novel strategies are required to identify physicians’ real-life needs with the final aim to improve modern medical information delivery.ObjectiveOur research used an innovative tool to collect real-time physician queries in order to investigate information needs and seeking behavior of Italian neurologists treating patients with multiple sclerosis (MS) and migraine.MethodsThe study was designed as an exploratory mixed methods (ie, qualitative and quantitative) study involving 15 consecutive days of observation. A total of 50 neurologists (n=25 MS and n=25 migraine specialists) were recruited. Data were collected using an instant messaging mobile app designed for this research. At each information-seeking event, moderators triggered a computer-assisted personal interview including both semistructured interview and close-ended questions. Interactions and physician queries collected using the mobile app were coded into emerging themes by content analysis.ResultsNeurologist queries were relevant to the following major themes: therapy management (36/50, 71%) and drug-related information (34/50, 67%), followed by diagnostic strategies and procedures (21/50, 42%). Quantitative analysis indicated online resources were preferentially used by clinicians (48/50, 96%) compared with offline sources (24/50, 47%). A multichannel approach, in which both online and offline sources were consulted to meet the same need, was adopted in 33% (65/198) of information-seeking events. Neurologists more likely retrieved information from online relative to offline channels (F=1.7; P=.01). MS specialists were 53% more likely to engage in one information-seeking event compared with migraine neurologists (risk ratio 1.54; 95% CI 1.16-2.05). MS specialists tended to be more interested in patient-related content than migraine clinicians (28% [7/25] vs 10% [2/25], P=.06), who conversely more likely sought information concerning therapy management (85% [21/25] vs 60% [15/25], P=.05). Compared with MS clinicians, migraine specialists had a harder time finding the required information, either looking at online or offline channels (F=12.5; P=.01) and less frequently used offline channels (30% [8/25] vs 60% [15/25] of information-seeking events, P=.02). When multiple sources needed to be consulted to retrieve an information item, a reduced satisfaction rate was observed both among migraine and MS specialists (single source vs multiple sources P=.003).ConclusionsThis study provides a detailed description of real-life seeking behavior, educational needs, and information sources adopted by Italian MS and migraine neurologists. Neurologist information needs and seeking behavior reflect the specific characteristics of the specialty area in which they operate. These findings suggest identification of time- and context-specific needs of clinicians is required to design an effective medical information strategy.

Laboratory Monitoring Practices Among Canadian Multiple Sclerosis Clinicians.

Advances in multiple sclerosis (MS) disease modifying therapy (DMT) have increased laboratory monitoring requirements. Our goal was to survey existing practices and perceptions of risk in laboratory monitoring throughout Canada and assess whether opportunities to improve patient care and safety exist. A web-based survey assessing prescriber demographics, current infrastructure, and concerns for lab monitoring was sent to the Canadian Network of MS Clinics (CNMSC) listserv, inviting MS clinicians across the country to participate. Respondents included 32/65 CNMSC-affiliated neurologists (49%), 6 registered nurses (RN), 2 nurse practitioners (NP), and 2 non-neurologist physicians from 8/10 provinces. For some questions, analysis was limited to 34 DMT-prescribing clinicians only. Despite broad implementation of electronic medical records (25/34, 74%), many prescribers (15/34, 44%) still receive laboratory results in paper form. In terms of lab monitoring infrastructure, we noted regional variability in the employment of nursing to monitor patient compliance with required laboratory monitoring. There is also a gap in laboratory surveillance, as less than 5% of respondents reported regularly reviewing results on weekends. Providers' length of practice and volume of MS patients were not associated with different perception of DMT laboratory monitoring risk. This nation-wide survey showed variability in infrastructure used in laboratory monitoring and regional variation in nursing involvement. Providers' level of concern for laboratory monitoring for DMTs did not vary by years of experience or volume of MS patients followed, suggesting that improved systems, rather than education, could ameliorate perceptions of risk.

Lael Anne Stone, MD (1959–2019)

Dr. Lael Stone, associate professor of neurology and renowned multiple sclerosis (MS) clinician-scientist-educator, died on February 4, 2019, nearly 2 years after her cancer diagnosis. An empathic and beloved healer, Lael modeled compassionate, patient-centered care for all trainees and colleagues who had the privilege of seeing her in action. Lael will also be remembered for her extensive MRI research, her contributions to comprehensive MS care, and the development of numerous MS clinicians.