bluuebunny/crossref_metadata_2025_split huggingface dataset:
078  The future of outpatient appointments: do patients with epilepsy prefer remote consultations?
Authors: Bose Smriti , Samarasekera Shanika , Tittensor Sarah , Greenhill Lynn 
Published: May 2022

In light of the COVID 19 pandemic, outpatient services have been restructured to facilitate remote con- sultations. As the pandemic has entered second and third ‘phases’, patients’ perspectives regarding remote consultation are essential.MethodsQuestionnaires were sent to PWE and carers attending tertiary epilepsy services at University Hospitals Birmingham. 25% of the population is from an ethnic minority.Results378 questionnaires were analysed- 278 in phase A, 100 in phase B. 57.0% respondents were female, 42.9% over 50 years. 8.2% had comorbid non epileptic attacks.55.8% respondents preferred telephone consultation in phase A, 66% in phase B. 34.9% preferred face to face in phase A, dropping to 32% by phase B, the majority being non-white.6.83% selected video consultation in phase A, none in phase B.The proportion citing ‘safety’ as a reason for remote consultation in phase A (23%) was greater than in B (5%) P<0.001The proportion citing ‘ease of access’ as key increased by phase B, though non significantly p=0.03.ConclusionEase of access continues to drive preferences for telephone consultations with infection risk in outpatients becoming less of a concern. Translating services are essential if remote consultation is to be accessible to all.smritibose55@gmail.com64
079  The impact of the COVID-19 pandemic on the mental health of MND patients
Authors: Gilchrist Abigail , Chaouch Amina , Ealing John , Hamdalla Hisham , Coen Sharon 
Published: May 2022

BackgroundMotor neurone disease (MND) is an isolating condition that has many implications on patients mental health. Throughout the COVID-19 pandemic, patients with chronic health conditions, including those with MND, have been further removed from the support of their specialist teams.Objectives1) To determine the impact of the COVID-19 pandemic on the mental health of the Salford Royal MND patients. 2) To improve the mental health support offered by the service by addressing patient concerns and feedback.MethodsA survey was sent to patients who had been receiving care by the Salford Royal MND Team since the 1st of January, 2020. The answers were reviewed and measures were put in place to address concerns. Patients were resurveyed two months later and answers were compared.ResultsPatients reported a higher proportion of issues with their mental health during the pandemic compared to prior. The service was seen as doing adequately but areas were identified to address. Our interventions were largely successful with many patients reporting an increase in the support they receive from the Salford Royal MND Team.ConclusionsAreas of improvement were identified to accommodate the change in the way the Salford Royal MND Team deliver their care.abigail.gilchrist@student.manchester.ac.uk
083  The impact of the Covid-19 pandemic on neurology outpatients services at Watford General Hospital
Authors: Teranaka Mayu , Mitchell Harry , Farrell Krista 
Published: May 2022

ObjectivesThe Covid-19 pandemic has significantly impacted the delivery of outpatient services, and spe- cialists have adjusted to maximise safety for both patients and clinicians. This study examined the impact of remote consultations on the management of neurology outpatients during the Covid-19 pandemic.MethodNew neurology referrals to Watford General Hospital from August to September 2020 were reviewed. The type of appointment, telephone or face-to-face (F2F); investigations requested; and outcomes, discharge or follow-up, were analysed.ResultsOut of 288 total patients, 59% were triaged to telephone and 41% to face-to-face appoint- ments. Patients with headache (77%; n=78) or suspected seizures (77%; n=61) were more often triaged to telephone appointments. Only 13% and 6% respectively required subsequent review in F2F appoint- ments. Patients were more often triaged to F2F appointments if referred with visual disturbance (80%; n=5), movement disorders (73%; n=30) or weakness (71%; n=17). The discharge rate for telephone (54%) and F2F (53%) groups were similar.ConclusionThis was a retrospective study of referrals to neurology outpatients during the Covid-19 pandemic. Results showed effective triaging with similar outcomes for telephone and F2F appointments. This data suggests that remote consultations are effective and could be helpful in managing patients after the Covid-19 pandemic.mayu.teranaka@nhs.net
088  Brainstem progressive multifocal leukoencephalopathy
Authors: Hawken Jonathan , Pearson Owen , Smith Rachel , Sadiq Shaheena , Ingram Gillian 
Published: May 2022

Progressive multifocal leukoencephalopathy (PML) is a rare but potentially fatal viral brain infection seen in immunocompromised patients and in patients with multiple sclerosis (MS) on disease-modifying treatments such as natalizumab. The most frequent reported pattern of PML is that of large subcortical T2 and diffusion hyperintense lesions. Brainstem PML, although previously reported, is rare and therefore easily missed.A 46-year-old lady with a diagnosis of MS on treatment with natalizumab for 5 years, serum JC virus high positive; presented with worsening of long-standing unsteadiness. Prior imaging showed multiple supra and infra-tentorial T2 hyperintensities; however, repeat imaging at presentation demonstrated an increase in size and number of lesions in the medulla, more confluent lesions in the pons with restricted diffusion, but no change in the supra-tentorial lesion load. Natalizumab therapy was suspended and a lumbar puncture revealed a high JC virus titre (1,090,000 m/L), confirming a diagnosis of PML. Serial MRI’s showed lesion progression with contrast enhancement at 10–12 weeks with associated CSF pleocytosis indicating immune reconstitution inflammatory syndrome. The patient was managed conservatively and her disability remained stable.PML affecting the brainstem is under-reported in the literature. Awareness and prompt recognition of the condition is needed to minimise complications.Jonathanhawken@wales.nhs.uk69
090  UK multiple sclerosis register: understanding the gaps between patient outpatient experiences and preferences
Authors: Kee Rachael , Ramsay Stephen , McKee Jon , Middleton Rod , Rodgers Jeff , Nicholas Richard , Kennedy Fiona , Hughes Stella , McDonnell Gavin 
Published: May 2022

BackgroundProvision of care to patients with Multiple Sclerosis (MS) is complex and an effective multi- disciplinary team (MDT) approach is needed. We surveyed patients’ experiences of ideal care and care actually provided.MethodsWe designed a questionnaire to evaluate service provision and expectation in a nationwide cohort of patients from the UK MS Register with subsequent qualitative and quantitative data analysis.Results2512 patients responded. 58% attend a specialist MS Clinic. Mean age 56 years, median EDSS6.0. Of patients with established diagnoses, 48% had RRMS, 35% SPMS, 12% PPMS, 5% undetermined. The biggest reported gaps at clinic were; physiotherapy (reality vs preference) 13% vs 45%, occupational therapy 6% vs 31% and continence advice 6% vs 29%. Clinical course did not influence expectation in these services. Substantial gaps also existed for counselling and dietetics provision. 18% of patients did not report new symptoms/relapses to any healthcare professional. RRMS patients were less likely to be part of this group and PPMS patients more likely, with no difference between genders.ConclusionsThis study illustrates a gap between MDT service provision and patient preference at MS/neurology clinics throughout the UK, and across all patient subgroups. A concerning number of patients do not report new symptoms to MS services, particularly PPMS patients. Further resources should be directed towards bridging these care gaps for MS patients.rachaelkee@doctors.org.uk|ABN Bursary70
091  Evaluation of remote assessments for multiple sclerosis in a real-world setting
Authors: Kuri Ashvin , Jacobs Benjamin Meir , Leddy Sara , Schmierer Klaus , Turner Benjamin , Allen-Philbey Kimberley , Stennett Andrea , Giovannoni Gavin , Thomson Alison , Dobson Ruth 
Published: May 2022

BackgroundThere is an urgent need for reliable methods to remotely monitor Multiple Sclerosis (MS). Existing assessments, such as Timed 25-Foot Walk (T25FW) and 9-Hole Peg Test (9HPT), are traditionally carried out in person by physicians. The use of self-administered, remote versions of these assessments could improve monitoring and hence care for people with MS (pwMS). This study evaluated the use of remote T25FW (rT25FW) and 9HPT (r9HPT) assessments.Methods pwMS were given comprehensive instructions and equipment for completing rT25FW/r9HPT. We assessed relationships between EDSS scores (through a previously-validated webEDSS) and contem- poraneous rT25FW/r9HPT using Spearman’s rank-order correlation, to evaluate consistency with previous in-person studies.ResultsSeventy-one pwMS completed the webEDSS and r9HPT, and 108 completed the webEDSS and rT25FW. There was a mild-moderate positive correlation between webEDSS and rT25FW (rho=0.40, p<0.0001, 95%CI=0.23–0.55), a finding consistent with previous in-person studies. There was a non-significant weak correlation between webEDSS and r9HPT. Distributions of rT25FW/r9HPT times were positively skewed. 100% of r9HPT times and 93.5% of rT25FW times were within specified limits used in clinical trials.ConclusionThese findings provide pilot evidence to indicate remote monitoring of MS is feasible. These assessments should be further developed to aid remote follow-up of pwMS.ashvin.kuri99@gmail.com
097  Disability and quality of life changes in people with MS (pwMS) throughout the COVID-19 pandemic
Authors: Rodgers William , Middleton Rod , Witts James , Lumicisi Brooke , Nicholas Richard 
Published: May 2022

IntroductionThe UK MS Register (UKMSR) has collected longitudinal patient reported outcomes (PROs) on pwMS regularly since 2011.Aim to assess changes in disability and quality in life (QOL) in the UKMSR before and during the pandemicMethods pwMS who answered the PROs: webEDSS to assess disability in MS and EQ5D-3L visual analogue scale for QOL, six months prior to the pandemic (t-6), at the start (t0), and six months after (t+6).Results1553 pwMS completed QOL assessment. Of the 458 who started with a lower QOL (<50) there was improvement at t0 which stabilised at t6 (t-6=34, t0=40, t6+=39, x2=89.91, p<0.001). In those starting with a QOL ³50 their QOL worsened at the start of the pandemic (t-6=75, t0/t+6=71, x2=58.28, p<0.001).webEDSS scores were completed by 902 pwMS. There was no change in 501 pwMS with an initial webEDSS ³6.0. In 401 pwMS with a webEDSS score <6 there was a worsening in median score at t0 but not then at t6 (t-6=3.0, t0/t+6=3.5, x2=21.57, p<0.001), QOL also worsened in a similar pattern in this group.ConclusionDisability and QOL worsened in those doing better at the start of the pandemic. Whereas in those more significantly affected, disability remained stable and QOL improved.r.m.middleton@swansea.ac.uk
098  Treatment escalation in secondary progressive MS identified clinically and algorithmically in relapsing remitting (RR)MS
Authors: Nicholas Richard , Middleton Rod , Witts James , Rodgers William , Hillert Jan , Stahmann Alexander , Horáková Dana , Magyari Melinda , Lines Carol ,   RCN SPMS Research Group
Published: May 2022

IntroductionObjective algorithms (OA; Ramanujam, 2020) identify SPMS in those with clinically assigned (CA) RRMS, suggesting SPMS is under-diagnosed in practice. It’s unclear if clinicians are aware of this evolution and escalate therapy in response to clinical worsening with highly active (HA) disease modifying treatments (DMT).ObjectiveAssess whether treatment intensity escalates as the disease advances from RRMS to OA-SPMS and from RRMS to CA-SPMS.MethodsMS registries in Czech Republic, Denmark, Germany, Sweden and UK were used. Active DMTs at the date of last visit were classified as highly active (HA) or not, and DMT usage prior to CA-SPMS or OA-SPMS classification.Results3740 SPMS and 9542 OA-SPMS patients were on DMTs. HADMT use was 21.3% prior to OA-SPMS clas- sification in RRMS and 27.9% (p<0.0001) once classified. HADMT use was 23.5% prior to CA-SPMS diagnosis and 36.9% (p<0.0001) once diagnosed. HADMT use in the UK was lower than in other registries for all groups.ConclusionAcross Europe the evolution to clinical SPMS via OA-SPMS is eliciting a response from clini- cians that is not initially reflected in a change of diagnosis. Country variations in HADMT use in transitioning patients should be explored further.r.m.middleton@swansea.ac.uk74
100  Making decisions and sharing information, the patient experience: the UK Multiple Sclerosis Register (UKMSR)
Authors: Ramsay Stephen , Magill Fiona , Goldsmith Grainne , Kee Rachael , McKee Jon , Middleton Rod , Nicholas Richard , Kennedy Fiona , Hughes Stella , McDonnell Gavin 
Published: May 2022

ObjectiveTo evaluate the exchange of information and communication between MS patients and the clinical team regarding decisions around disease modifying therapy (DMT) and MRI results utilising the UKMSR, an established, validated cohort of people with MS.MethodsAn online questionnaire was designed and then disseminated to patients in February 2020.ResultsFrom 2512 responses, 44% were on DMT (86% had RRMS). Of 1089 responses, 60% indicated that the decision to start DMT was made with the clinical team, whilst 13% responded it was “largely my teams’ decision”. Only 117 (~10%) felt they received “too little information”. Overall, 2459 patients had undergone ≥1 MRI, with 70% seeing the images at least once. Almost 90% of patients would be interested in viewing scans at clinic, appearing independent of DMT exposure, although 2/3 of those who were “not interested” were not on DMT.ConclusionsA majority of study participants reported adequate involvement and sharing of information in the decision-making process when starting DMT although a concerning minority appear disengaged. Patients are very interested in viewing MRI scans with a majority having had this opportunity. Not all expressed such an interest however. Patient preference should therefore be duly considered in clinical management.sramsay03@qub.ac.uk|ABN Bursary
104  A case of natalizumab-related progressive multifocal leukoencephalopathy treated with pembrolizumab
Authors: Robinson Rebecca , Ramsay Stephen , Burns Paul , Flynn Peter , Herron Brian , Poots Jonathan , Kennedy Fiona , Hughes Stella 
Published: May 2022

IntroductionProgressive multifocal leukoencephalopathy (PML) is a rare, but potentially devastating viral infection of the brain and can occur as a complication of natalizumab, a treatment for highly-active relapsing remitting multiple sclerosis (RRMS).Case: Patient A is 52-years-old, diagnosed with RRMS in 2015. She commenced disease-modifying therapy with natalizumab following four clinical relapses in one year and had a stable clinical course for the subsequent 4 years. She was JCV antibody positive (titre 3.64) but had opted to continue natalizumab therapy, despite the risk of PML.Early 2020, an MRI abnormality raised suspicion for PML. In May, she developed left hand weakness, pro- gressing to left hemiparesis. Serial MRIs showed increasing signal change however, it was difficult to differ- entiate PML from new inflammatory activity. CSF JCV PCR was negative on two occasions. She proceeded to brain biopsy, confirming PML. She was treated with pembrolizumab and has remained stable.DiscussionThis case highlights the difficulty in distinguishing PML from an MS relapse, despite the use of MRI and CSF. We highlight the role of brain biopsy in making a definitive diagnosis. There is also lack of consensus on effective treatment for PML, but emerging evidence for use of pembrolizumab, a PD-1 inhibitor.rrobinson17@qub.ac.uk77
004  Physical activity monitoring to assess disability progression in multiple sclerosis
Authors: Stuart Charlotte M , Philip Sheaba , Galea Ian , Group SIMSStudy 
Published: May 2022

To monitor multiple sclerosis (MS) disability, scales like the Expanded Disability Status Scale (EDSS) and Multiple Sclerosis Functional Composite (MSFC) are commonly used. Both rely on a single clinical assess- ment in time which may not reflect the patient’s performance in their living environment. They also require training and are time consuming. The SenseWear armband incorporates a triaxial accelerometer sensitive to upper and lower limb motion. A proprietary algorithm computes several physical activity variables, such as total energy expenditure, physical activity duration, metabolic equivalents (METs) and average daily steps. Here we assess the SenseWear armband for its ability to monitor disease progression, alongside the EDSS and MSFC. Progressive MS patients (n=50) wore the device for one week, every 6 months for2.5 years. MSFC and EDSS were performed at the end of each week. The armband was agreeable and easy to use. Patients showed progression across all three disability measures (p<0.01). Baseline physical activity, EDSS and MSFC values correlated well between each other. The change in the three measures with time correlated poorly, suggesting that they measure functional aspects which have different pro- gression trajectories. In summary, physical activity monitoring is a user-friendly and ecological method to measure MS disability progression.c.stuart@soton.ac.uk
116  Serum immunoglobulin levels and infection risk in Phase 3 ofatumumab trials in relapsing multiple sclerosis
Authors: Wiendl Heinz , Seze Jérôme de , Bar-Or Amit , Correale Jorge , Cross Anne , Kappos Ludwig , Selmaj Krzysztof , Häring Dieter , Su Wendy ,   et al
Published: May 2022

ObjectiveTo assess the effect of ofatumumab vs teriflunomide on serum immunoglobulin (Ig) levels and evaluate potential association between decrease in IgM/IgG levels and infection risk.MethodsSerum IgM/IgG levels were monitored at baseline (BL), W4, W12, and every 12 weeks thereafter. Proportion of patients with IgM/IgG levels below the lower limit of normal (ResultsMean IgM/IgG levels were within reference ranges over time. Over all post-BL visits, higher propor- tion of ofatumumab patients had IgMConclusionReduction in serum IgM levels was observed over time, Ig levels predominantly remained above LLN. No decrease in IgG levels was reported within the observation period. There was no apparent association between decreased Ig levels and infections in ofatumumab-treated patients.Funding statementThis study was funded by Novartis Pharma AG, Basel, Switzerland. teresa.sawtell@novartis.com83
117  Sustained and rapid B-cell depletion with ofatumumab: population pharma- cokinetic B-cell modeling in relapsing MS patients
Authors: Graham Gordon , Kahn Joseph , Savelieva Marina , Yu Huixin , Pingili Ratnakar , Willi Roman , Ramanathan Krishnan , David Olivier , Häring Dieter , Bagger Morten 
Published: May 2022

ObjectivesTo characterize the pharmacokinetic (PK) relationship of ofatumumab for B-cell counts in RMS patients, assess the PK and B-cell dynamics given the Phase 3 dose regimen through PK-B-cell simulations and explore the effect of covariates on PK and B-cells.MethodsThe PK-B-cell model was developed using data from Phase 2 and 3 trials. Simultaneous fitting was performed to assess the interaction between PK and B-cells. Effect of body weight, age, administra- tion route, s.c. injection device, and baseline B-cell count on PK and B-cell parameters were evaluated.ResultsIn total, 9,168 plasma concentrations from 1,440 patients were included in PK analysis and 17,158 B-cell counts from 1,486 patients in B-cell analysis. Simulations demonstrated a rapid, median B-cell depletion to <10 cells/µL in 8.75 days; no signs of B-cell repletion occurred between doses, and >94% of patients had <10 cells/µL at B-cell steady state and pre-dose. Regardless of weight, all patients achieved low B-cell counts, similar to results observed in Phase 3 trials. Baseline age, B-cell counts and injection device had negligible effect on PK parameters.ConclusionThe PK-B-cell model showed early, rapid, and sustained B-cell depletion with ofatumumab, confirming the rationale for the chosen Phase 3 dosing regimen.Funding statement.This study was funded by Novartis Pharma AG, Basel, Switzerland. teresa.sawtell@novartis.com
120  The impact of socioeconomic status and comorbidities on emergency admissions in patients with multiple sclerosis
Authors: Dobson Ruth , Chico Dan , Evans Rosanna , Reyes Saúl , Ford Helen , Giovannoni Gavin , Altincatal Arman , Vonsy Jean 
Published: May 2022

IntroductionSocioeconomic status (SES) is a major determinant of health outcomes. This study explored the relationship between SES, comorbidities, and emergency admissions in people with multiple sclerosis (pwMS).MethodsNational Health Service England data from the Hospital Episodes Statistics (HES) database were used. Socioeconomic deprivation was assessed using the English Index of Multiple Deprivation.ResultsIn 2019–2020, 6,210 of 36,765 pwMS in England (16.9%) were classified as “most deprived” (+29.1% versus 2015–2016). Of these most deprived pwMS, 17.8% had an emergency admission. Across 25 des- ignated Neuroscience Centres, the percentage of “most deprived” pwMS ranged from 3.0%-34.0% and the percentage of “most deprived” pwMS with emergency admissions ranged from 0%-47.6%. In England, diagnoses more common in emergency MS admissions (compared to all MS admissions) included pneumonia, sepsis, intestinal disorders, decubitus ulcer/pressure area, and disorders of fluid, electrolyte, and acid-base balance. Factors associated with deprivation (type 2 diabetes, hypertension, smoking) were seen across all MS admissions.ConclusionsThe proportion of “most deprived” pwMS and the proportion of “most deprived” pwMS with emergency admissions varied widely across centres. MS- and deprivation-related comorbidities were observed in emergency admissions of pwMS, highlighting the importance of addressing these issues.SupportBiogen. Disclosures: Included in poster. jean.vonsy@biogen.com85
124  Symptoms of post-traumatic stress disorder are common after being diagnosed with multiple sclerosis
Authors: Giovannoni Gavin , Pepper George , Sloan Rob , DiMauro Sophie , Thompson Emily 
Published: May 2022

IntroductionPeople with multiple sclerosis (PwMS) commonly describe being diagnosed with MS as traumatic. We did a web survey of pwMS to ascertain how many have symptoms compatible with post- traumatic stress disorder (PTSD) and how many have been diagnosed with PTSD.MethodsA web survey was conducted from the 18-Dec-20 to the 4-Jan-21 via the shift.ms platform. Shift. ms is a social network of 38,000 pwMS. Data were collected anonymously.Results1079 pwMS (78% female, mean age of 48.3yrs) with an average disease duration since diagnosis of 15.7yrs completed the survey. 58.1% of respondents reported symptoms associated with PTSD in relation to MS. Only 18.1% of respondents had received a formal diagnosis of PTSD. Comments highlighted how the diagnosis of MS was given by a healthcare professional (HCP) as being a major factor in triggering PTSD-like symptoms.ConclusionsPTSD-like symptoms and PTSD are common in pwMS and may be attributable to the way the diagnosis of MS is made. It is important that HCPs are aware of this problem and use empathetic com- munication techniques to try and mitigate against PTSD in this vulnerable group of people.g.giovannoni@qmul.ac.uk87