Background The number of people living with long-term neurological conditions (PwLTNC) in Europe is on the rise and they experience a variety of complex symptoms, often requiring hospital admissions. This survey explored challenges healthcare professionals are encountering when providing care for PwLTNC.Methods A web-based survey was developed by the European Academy of Neurology (EAN) Scientific Panel on Palliative Care and disseminated by the EAN Scientific Department through the official mailing list, website and newsletter in the period 3 January 2024 to 27 February 2024. The United Nations' geoscheme for Europe was applied and differences between the North/West vs South/East/Greater European regions analysed.Results A total of 153 EAN members (50% women, mean age 48 years) were participated. They expressed their dissatisfaction with the availability of long-term healthcare, including palliative care (60%), psychosocial (67%) and spiritual support (60%) offered to PwLTNC, their families and carers, the resources to provide healthcare for PwLTNC in medical emergencies and knowledge of acute medical staff about PwLTNC (45%). Dissatisfaction with the availability of resources needed to provide healthcare for PwLTNC, the psychosocial support offered to PwLTNC and the extent of advance care planning implementation was more frequently reported in South/East/Greater Europe compared with North/West Europe.Conclusion This survey of the EAN members revealed dissatisfaction with long-term healthcare, including palliative care, offered to PwLTNC, their families and carers and pointed out healthcare disparities between the two European macroregions, with more critical figures in South/East/Greater Europe.
To explore differences in patient reported outcomes, health care resources and expenditures in persons with multiple sclerosis (pwMS) with or without access to an MS-nurse. An observational, multicenter and cross-sectional study was conducted. Seven centers with, and twelve centers without an MS-nurse participated. The multiple sclerosis impact scale-29 (MSIS-29) was the primary outcome measure. Secondary outcome measures included: hospital anxiety and depression scale, coping measures, health-economic and disease-knowledge parameters. Three hundred thirty-four pwMS were included, of which 196 had access to an MS-nurse. Mean age was 44.5 ± 11.4 and 69
Background:The care of patients with brain tumors is a complex task that requires quality standards and quality assurance indicators. In the present study, several quality indicators were evaluated in routine clinical care. Methods:The EORTC Brain Tumor Group (BTG) developed quality indicators from published guidelines and tested them in 19 BTG sites across Europe. Each site extracted data from the files of 20 randomly selected glioblastoma patients diagnosed in 2018. Associations between quality indicators, site characteristics and median overall survival (mOS) were examined. Results:A total of 364 patient files were evaluated at 19 sites. Excellent compliance was observed in the documentation of neuropathology report with isocitrate dehydrogenase (IDH) status (92.0%), O6 -methylguanine DNA methyltransferase promoter methylation (MGMT) status (78.0%), multidisciplinary case discussion (95.3 %), extent of resection (87.1%), and radiotherapy details (96.9%) as well as consent to chemotherapy (75.5%). Performance was not as good for early postoperative MRI (67.2%), psycho-oncological care (40.5%), avoiding antineoplastic therapy in the last weeks of life (63.1%) and early referral to palliative services (23.5%). Timely start of radiotherapy (P = .0153), the presence of a radiotherapy report in the medical record (P = .0077), and patient education on oral chemotherapy (P = .0002) were positively associated with mOS, while early referral to palliative care was associated with shorter mOS (P < .0001). Conclusions:The quality indicators tested in this research project performed with some variability between sites. Significant associations between individual quality indicators and mOS were observed. The proposed quality indicators should be validated prospectively.
To report 4-year efficacy and safety data of ocrelizumab in a subgroup of patients with early, high-activity relapsing-remitting multiple sclerosis (HA RRMS) from the ENSEMBLE study (NCT03085810) and to assess predictors of no evidence of disease activity (NEDA)-3 in the overall ENSEMBLE population.
ObjectivesThis study aimed to assess the diagnostic management and follow-up imaging for glioma patients across Belgian hospitals by calculating process indicators.MethodsPatients with newly diagnosed glioma in Belgium (2016-2019) were selected from the Belgian Cancer Registry. The National Social Security Number served as unique patient identifier, linking the Registry to vital status and reimbursement data. Nine measurable process related to diagnosis and follow-up imaging were identified, with reformulations for 7 due to data limitations. For each indicator, technical documentation sheets, containing all required details (rationale, numerator and denominator, target, limitations, benchmarking, subgroup analyses) were developed, reviewed by a multidisciplinary expert panel, and validated in six pilot hospitals. Per indicator, patients were assigned to the most relevant hospital per indicator using allocation algorithms.ResultsResults for process indicators assessing MRI use in glioma diagnosis and follow-up aligned with predefined targets (90%), except for early postoperative MRI (48.5% vs. target 90%). Mandatory reporting of the WHO performance status (89.3% vs. target 100%) and performance of full-spine (43.6% vs. target 90%) and follow-up MRI (73.5% vs. target 90%) in ependymoma were suboptimal. The largest variability across centers was noted for the indicator on early postoperative MRI.ConclusionThis calculation of process indicators identified opportunities for improvement in diagnosis and follow-up imaging for glioma patients in Belgium. Monitoring indicator results and providing individual feedback reports to the Belgian hospitals invites neuro-oncology care teams and hospital managements to reflect on their results and to take measures to continuously improve care for glioma.
BackgroundCerebrospinal fluid (CSF) kappa free light chain (κFLC) measures gained increasing interest as diagnostic markers in multiple sclerosis (MS). However, the lack of studies comparing assay-dependent diagnostic cutoff values hinders their use in clinical practice. Additionally, the optimal κFLC parameter for identifying MS remains a subject of ongoing debate.ObjectivesThe aim of this study was to compare same-sample diagnostic accuracies of the κFLC index, κIgG index, CSF κFLC/IgG ratio, and isolated CSF κFLC (iCSF-κFLC) between two reference centers using different methods.MethodsPaired serum and CSF samples were analyzed for κFLC and albumin concentrations by Freelite®-Optilite (Sint-Jan Bruges hospital) and N Latex®-BNII (Ghent University hospital). Diagnostic performance to differentiate MS from controls was assessed using ROC curve analysis.ResultsA total of 263 participants were included (MS, n = 80). Optimal diagnostic cutoff values for the κFLC index (Freelite®-Optilite: 7.7; N Latex®-BNII: 4.71), κIgG index (Freelite®-Optilite: 14.15, N Latex®-BNII: 12.19), and CSF κFLC/IgG ratio (Freelite®-Optilite: 2.27; N Latex®-BNII: 1.44) differed between the two methods. Sensitivities related to optimal cutoff values were 89.9% (Freelite®-Optilite) versus 94.6% (N Latex®-BNII) for the κFLC index, 91% (Freelite®-Optilite) versus 92.2% (N Latex®-BNII) for the κIgG index, and 81.3% (Freelite®-Optilite) versus 91.4% (N Latex®-BNII) for the CSF κFLC/IgG ratio. However, for iCSF-κFLC, optimal diagnostic cutoff values (0.36 mg/L) and related specificities (81.8%) were identical with a related diagnostic sensitivity of 89.9% for Freelite®-Optilite and 90.5% for N Latex®-BNII. The diagnostic performance of the κFLC index [area under the curve (AUC) Freelite®-Optilite: 0.924; N Latex®-BNII: 0.962] and κIgG index (AUC Freelite®-Optilite: 0.929; N Latex®-BNII: 0.961) was superior compared to CSF oligoclonal bands (AUC: 0.898, sensitivity: 83.8%, specificity: 95.9%).ConclusionsThe κFLC index and the κIgG index seem to be excellent markers for identifying MS, irrespective of the method used for κFLC quantification. Based on the AUC, they appear to be the measures of choice. For all measures, optimal cutoff values differed between methods except for iCSF-κFLC. iCSF-κFLC might therefore serve as a method-independent, more cost-efficient, initial screening measure for MS. These findings are particularly relevant for clinical practice given the potential future implementation of intrathecal κFLC synthesis in MS diagnostic criteria and for future multicentre studies pooling data on κFLC measures.
Ocrelizumab is an approved intravenously administered anti-CD20 antibody for multiple sclerosis (MS). The safety profile and patient preference for conventional versus shorter ocrelizumab infusions were investigated in the ENSEMBLE PLUS study. ENSEMBLE PLUS was a randomized, double-blind substudy to the single-arm ENSEMBLE study (NCT03085810), comparing outcomes in patients with early-stage relapsing–remitting MS receiving ocrelizumab 600 mg over the approved 3.5-h (conventional) versus 2-h (shorter) infusion. The primary endpoint was the proportion of patients with infusion-related reactions (IRRs) following the first randomized dose (RD); the secondary endpoint included IRR frequency at subsequent RDs. At first RD, the number of patients with an IRR in the conventional (101/373; 27.1
AbstractMorning Report is a time-honored tradition where physicians-in-training present cases to their colleagues and clinical experts to collaboratively examine an interesting patient presentation. The Morning Report section seeks to carry on this tradition by presenting a patient's chief concern and story, inviting the reader to develop a differential diagnosis and discover the diagnosis alongside the authors of the case. This report examines the story of a 36-year-old man who sought evaluation for a persistent headache and numbness on the cheek. Using questions, physical examination, and testing, an illness script for the presentation emerges. As the clinical course progresses, the differential is refined until a diagnosis is made.
BACKGROUND AND OBJECTIVES:Early treatment of multiple sclerosis (MS) reduces disease activity and the risk of long-term disease progression. Effectiveness of ocrelizumab is established in relapsing MS (RMS); however, data in early RMS are lacking. We evaluated the 4-year effectiveness and safety of ocrelizumab as a first-line therapy in treatment-naive patients with recently diagnosed relapsing-remitting MS (RRMS). METHODS:ENSEMBLE was a prospective, 4-year, international, multicenter, single-arm, open-label, phase IIIb study. Patients were treatment naive, aged 18-55 years, had early-stage RRMS with a disease duration ≤3 years, Expanded Disability Status Scale (EDSS) score ≤3.5, and ≥1 clinically reported relapse(s) or ≥1 signs of brain inflammatory activity on MRI in the prior 12 months. Patients received IV ocrelizumab 600 mg every 24 weeks. Effectiveness endpoints over 192 weeks were proportion of patients with no evidence of disease activity (NEDA-3; defined as absence of relapses, 24-week confirmed disability progression [CDP], and MRI measures, with prespecified MRI rebaselining at week 8), 24-week/48-week CDP and 24-week confirmed disability improvement, annualized relapse rate (ARR), mean change in EDSS score from baseline, and safety. Cognitive status, patient-reported outcomes, and serum neurofilament light chain (NfL) were assessed. Descriptive analysis was performed on the intention-to-treat population. RESULTS:Baseline characteristics (N = 678) were consistent with early-stage RRMS (n = 539 patients, 64.6% female, age 40 years and younger; median age: 31.0 years; duration since: MS symptom onset 0.78 years, RRMS diagnosis 0.24 years; mean baseline EDSS score [SD] 1.71 [0.95]). At week 192, most of the patients had NEDA-3 (n = 394/593, 66.4%), 85.0% had no MRI activity, 90.9% had no relapses, and 81.8% had no 24-week CDP over the study duration. Adjusted ARR at week 192 was low (0.020, 95% CI 0.015-0.027). NfL levels were reduced to and remained within the healthy donor range, by week 48 and week 192, respectively. No new or unexpected safety signals were observed. DISCUSSION:Disease activity based on clinical and MRI measures was absent in most of the patients treated with ocrelizumab over 4 years in the ENSEMBLE study. Safety was consistent with the known profile of ocrelizumab. Although this single-arm study was limited by lack of a parallel group for comparison of outcome measures, the positive benefit-risk profile observed may provide confidence to adopt ocrelizumab as a first-line treatment in newly diagnosed patients with early RMS. CLASSIFICATION OF EVIDENCE:This study provides Class IV evidence that adult patients with early-stage MS who were treatment naive maintained low disease activity (NEDA-3) over 4 years with ocrelizumab treatment; no new safety signals were detected. TRIAL REGISTRATION INFORMATION:ClinicalTrials.gov Identifier NCT03085810; first submitted March 16, 2017; first patient enrolled: March 27, 2017; available at clinicaltrials.gov/ct2/show/NCT03085810.
Background and ObjectivesEarly treatment of multiple sclerosis (MS) reduces disease activity and the risk of long-term disease progression. Effectiveness of ocrelizumab is established in relapsing MS (RMS); however, data in early RMS are lacking. We evaluated the 4-year effectiveness and safety of ocrelizumab as a first-line therapy in treatment-naive patients with recently diagnosed relapsing-remitting MS (RRMS).MethodsENSEMBLE was a prospective, 4-year, international, multicenter, single-arm, open-label, phase IIIb study. Patients were treatment naive, aged 18-55 years, had early-stage RRMS with a disease duration <= 3 years, Expanded Disability Status Scale (EDSS) score <= 3.5, and >= 1 clinically reported relapse(s) or >= 1 signs of brain inflammatory activity on MRI in the prior 12 months. Patients received IV ocrelizumab 600 mg every 24 weeks. Effectiveness endpoints over 192 weeks were proportion of patients with no evidence of disease activity (NEDA-3; defined as absence of relapses, 24-week confirmed disability progression [CDP], and MRI measures, with prespecified MRI rebaselining at week 8), 24-week/48-week CDP and 24-week confirmed disability improvement, annualized relapse rate (ARR), mean change in EDSS score from baseline, and safety. Cognitive status, patient-reported outcomes, and serum neurofilament light chain (NfL) were assessed. Descriptive analysis was performed on the intention-to-treat population.ResultsBaseline characteristics (N = 678) were consistent with early-stage RRMS (n = 539 patients, 64.6% female, age 40 years and younger; median age: 31.0 years; duration since: MS symptom onset 0.78 years, RRMS diagnosis 0.24 years; mean baseline EDSS score [SD] 1.71 [0.95]). At week 192, most of the patients had NEDA-3 (n = 394/593, 66.4%), 85.0% had no MRI activity, 90.9% had no relapses, and 81.8% had no 24-week CDP over the study duration. Adjusted ARR at week 192 was low (0.020, 95% CI 0.015-0.027). NfL levels were reduced to and remained within the healthy donor range, by week 48 and week 192, respectively. No new or unexpected safety signals were observed.DiscussionDisease activity based on clinical and MRI measures was absent in most of the patients treated with ocrelizumab over 4 years in the ENSEMBLE study. Safety was consistent with the known profile of ocrelizumab. Although this single-arm study was limited by lack of a parallel group for comparison of outcome measures, the positive benefit-risk profile observed may provide confidence to adopt ocrelizumab as a first-line treatment in newly diagnosed patients with early RMS.Classification of EvidenceThis study provides Class IV evidence that adult patients with early-stage MS who were treatment naive maintained low disease activity (NEDA-3) over 4 years with ocrelizumab treatment; no new safety signals were detected.Trial Registration InformationClinicalTrials.gov Identifier NCT03085810; first submitted March 16, 2017; first patient enrolled: March 27, 2017; available at clinicaltrials.gov/ct2/show/NCT03085810.
[email protected] (I. Lawrence). Traiter tôt la SEP, avec un traitement de haute efficacité, permettrait d'améliorer le bénéfice clinique à long terme et la qualité de vie des patients. L'étude de phase IIIb ENSEMBLE (NCT03085810) évalue l'efficacité et la tolérance d'OCR dans la SEP-RR précoce. Présenter les résultats intermédiaires à 2 ans de l'étude ENSEMBLE d'OCR chez des patients SEP-RR à un stade précoce (maladie ≤ 3 ans) naïfs de traitement. Les patients (18–55 ans, maladie ≤ 3 ans, EDSS ≤ 3,5 et ≥ 1 poussée ou ≥ 1 activité à l'IRM en 12 mois) ont reçu OCR 600 mg toutes les 24 semaines pendant 192 semaines. Les critères d'évaluation incluaient l'absence d'activité de la maladie (NEDA-3 : absence de poussée, de progression du handicap confirmée à 24 semaines (CDP24) et d'activité à l'IRM [après IRM de rebaseline à 8 semaines]), le taux annualisé de poussées (TAP), l'évolution médiane du score EDSS et la tolérance. À l'inclusion : les caractéristiques (n = 1225) étaient conformes à celles de patients SEP-RR à un stade précoce, 78,9 % âgés ≤ 40 ans, 32 ans d'âge médian, 64 % de femmes, 0,74 ans depuis les 1ers symptômes, 0,22 ans depuis le diagnostic, score EDSS [moyen (DS)] : 1,75 [1,80 (0,93)]. À la semaine 96 : 77,3 % (n = 857) de patients NEDA, 88,9 % sans activité à l'IRM, 93,4 % sans poussée et 90,7 % sans CDP24, le TAP ajusté était faible (0,033, IC 95 % 0,026–0,042) et le score EDSS moyen (DS) diminué significativement (p < 0,0001) à 1,67 (1,12). Le profil de tolérance était cohérent avec celui connu pour OCR. Aucun nouveau signal de tolérance n'a été rapporté. La majorité des patients SEP-RR à un stade précoce ayant reçu OCR dans l'étude ENSEMBLE étaient en NEDA après 2 ans de traitement.
Objective: To assess patient preference for conventional (CON) or shorter (SHORT) infusion post unblinding of the ENSEMBLE PLUS study. Background: Shortening the infusion duration of ocrelizumab to 2 hours reduces total site stay. Previous infusion-related reactions (IRRs) are a risk factor for future IRRs. Identification of specific symptoms, potential risk factors during infusions, was investigated in ENSEMBLE PLUS. Design/Methods: ENSEMBLE PLUS was a randomized, double-blind substudy to ENSEMBLE (NCT03085810). Ocrelizumab (600 mg) administered over the approved 3.5-hour infusion time (CON) was compared with a 2-hour infusion (SHORT). The primary endpoint was the proportion of patients with IRRs at first randomized dose (RD). Risk factors were assessed for development of IRRs. Patients could switch between CON/SHORT infusion post unblinding. Results: Within 24 hours of first RD, 27.1% (CON: n=101/373) versus 28.8% (SHORT: n=107/372) of patients had IRRs. Most IRRs (CON 100%; SHORT 97.2%) were mild or moderate (Grade 1 or 2);none were Grade 4 or 5 IRRs. No IRR-related discontinuations occurred. The proportion of patients with throat irritation as an IRR symptom was 23.1% (CON) and 33.0% (SHORT) in patients with ≥1 throat irritation before first RD; in patients with no throat irritation before first RD, the proportion was 5.3% (CON) and 5.4% (SHORT). Patient migraine/headache history did not correlate with IRR development. Post unblinding, 79.7% patients switched to SHORT infusion from CON, and 94.6% patients stayed on SHORT infusion. Treating neurologists frequently attempted minor adaptations of pre-medication timing/regimen without substantially affecting IRR incidence. Conclusions: Previous IRRs may be a risk factor for future IRRs but are not influenced by shorter infusion time. Pre-randomization throat irritation was predictive of developing throat irritation as an IRR symptom, however migraines were not. Most patients remained on/moved to SHORT infusion after unblinding. Overall, IRRs did not strongly influence patient decisions. Most pre-medication changes had no impact on IRR incidence. Disclosure: Dr. Bermel has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. Dr. Bermel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Sanofi/Genzyme. Dr. Bermel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Genentech/Roche. Dr. Bermel has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Viela Bio. Dr. Bermel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Novartis. Dr. Bermel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Merck Serono. Dr. Bermel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Astra Zeneca. Dr. Bermel has received personal compensation in the range of $500-$4,999 for serving as a Consultant for LabCorp. Dr. Bermel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for TG Therapeutics. The institution of Dr. Bermel has received research support from Biogen. The institution of Dr. Bermel has received research support from Roche. The institution of Dr. Bermel has received research support from Novartis. Dr. Bermel has received intellectual property interests from a discovery or technology relating to health care. Joep Killestein has nothing to disclose. Prof. Berger has received personal compensation in the range of $10,000-$49,999 for serving as a speaker at scientific meetings and participant of local and international advisory boards with various companies producing and markerting treatments for multiple sclerosis (Almirall, Biogen, Biologix, Bionorica, Celgene-BMS, Merck, Novartis, Roche, Sanofi-Genzyme, TG Therapeutics, UCB). Prof. Brochet has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Merck. Prof. Brochet has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for celgene. Prof. Brochet has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for jansen. Prof. Brochet has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for biogen. Prof. Brochet has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for novartis. Prof. Brochet has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for merck. Prof. Brochet has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for biogen. Prof. Brochet has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for celgene. William M. Carroll, MBBS, MD, FRACP has nothing to disclose. Dr. Freedman has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Actelion(Janssen/J&J). Dr. Freedman has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Alexion. Dr. Freedman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for BiogenIdec. Dr. Freedman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for BMS/Celgene. Dr. Freedman has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for EMD Inc. Dr. Freedman has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Sanofi-Genzyme. Dr. Freedman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Roche. Dr. Freedman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Freedman has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Actelion (Janssen/J&J). Dr. Freedman has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Freedman has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Atara Biotherapeutics. Dr. Freedman has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Bayer Healthcare. Dr. Freedman has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for BiogenIdec. Dr. Freedman has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Clene Nanomedicine. Dr. Freedman has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for GRI Bio. Dr. Freedman has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Dr. Freedman has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Magenta Therapeutics. Dr. Freedman has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Merck Serono. Dr. Freedman has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Freedman has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi Genzyme. Dr. Freedman has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Sanofi Genzyme. Dr. Freedman has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for EMD Serono. The institution of Dr. Freedman has received research support from Sanofi Genzyme. Dr. Holmoy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Norwegian MS Society. Dr. Holmoy has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Biogen. Dr. Holmoy has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Merck. Dr. Holmoy has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Sanofi. Dr. Holmoy has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Novartis. Dr. Holmoy has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Merck. Dr. Karabudak has nothing to disclose. Dr. Nos has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for F. Hoffmann-La Roche Ltd.. Dr. Patti has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion, Almirall, Bayer, Biogen, Bristol Meyers and Squibb Merck, Roche, Sanofi, TEVA. Dr. Patti has received personal compensation in the range of $500-$4,999 for serving as an officer or member of the Board of Directors for University of Catania and AISM/FISM, Fondazione Italiana Sclerosi Multipla. Ms. Perrin Ross has received personal compensation in the range of $0-$499 for serving as a Consultant for Horizon. Ms. Perrin Ross has received personal compensation in the range of $0-$499 for serving as a Consultant for EMD Serono. Ms. Perrin Ross has received personal compensation in the range of $0-$499 for serving as a Consultant for Alexion. Ms. Perrin Ross has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Ms. Perrin Ross has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Vanopdenbosch has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for celgene. Dr. Vanopdenbosch has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen . Dr. Vanopdenbosch has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for F Hoffmann La Roche. Dr. Vanopdenbosch has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Vanopdenbosch has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Merck Serono. Dr. Vanopdenbosch has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi Genzyme. The institution of Dr. Vollmer has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Biogen IDEC. The institution of Dr. Vollmer has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Genentech/Roche. The institution of Dr. Vollmer has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Siranax. The institution of Dr. Vollmer has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Celgene. The institution of Dr. Vollmer has received personal compensation in the range of $500-$4,999 for serving as a Consultant for EMD Serono. The institution of Dr. Vollmer has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Bristol Meyers Squib. The institution of Dr. Vollmer has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Viela Bios. The institution of Dr. Vollmer has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. The institution of Dr. Vollmer has received research support from Rocky Mountain MS Center. The institution of Dr. Vollmer has received research support from Biogen. The institution of Dr. Vollmer has received research support from Actelion. The institution of Dr. Vollmer has received research support from Genentech/Roche. The institution of Dr. Vollmer has received research support from Anokion. The institution of Dr. Vollmer has received research support from TG Therapeutics. Dr. Buffels has nothing to disclose. Karen Kadner has received personal compensation for serving as an employee of F. Hoffmann-La Roche Ltd. Dr. Bortolami has received personal compensation for serving as an employee of Roche. Dr. Bortolami has received personal compensation in the range of $500-$4,999 for serving as a Statistical Reviewer with Emergency Medicine Journal. Dr. Hartung has received personal compensation in the range of $500-$4,999 for serving as a Consultant for BMS Celgene. Dr. Hartung has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Geneuro. Dr. Hartung has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Hartung has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Hartung has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Merck. Dr. Hartung has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Bayer. Dr. Hartung has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for TG Therapeutics. Dr. Hartung has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Dr. Hartung has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Frontiers Neurology.
We describe a case of a 36-year-old woman with no psychiatric or somatic history who was presented to the emergency department with a profound change in mental status, more precisely a catatonic status and auditory hallucinations. Due to the unclear aetiology and suspicion of underlying psychiatric problems, the patient was admitted to the psychiatric ward. After discharge against medical advice, readmission was necessary due to deterioration and sudden onset of myoclonus. On further examination, acute disseminated encephalomyelitis (ADEM) was diagnosed. This case illustrates that ADEM can present itself as an initial psychiatric problem and emphasizes the importance of extensive medical clearance at presentation and continued attention for possible somatic origin, even when the initial clearance turns out to be negative.
Objectives: To ascertain the involvement of palliative care with neurology services in the care of people with amyotrophic lateral sclerosis (ALS) in the United Kingdom, Italy and Switzerland, in particular the collaboration with and referral from neurology, the involvement in multidisciplinary team care and in the respiratory support of ALS patients. Methods: In 2019, two online surveys were undertaken of palliative care specialists, using specialist groups of the European Academy of Neurology, European Association of Palliative Care and the Association of Palliative Medicine for Great Britain and Ireland. Results: The respondents were specialist palliative care professionals, predominantly senior doctors, involved in the care of people with ALS. As the numbers of respondents from many countries were in single figures the analysis was restricted to the United Kingdom, Italy and Switzerland. The time of involvement varied, with early involvement commonest in the UK. Barriers to referral included neurologists not referring and financial issues, particularly in Switzerland. The reluctance of patients and families to see palliative care services was reported as less than 20% in all countries. Respondents were often involved in the care of people receiving noninvasive ventilation (NIV), in all countries. and with tracheostomy ventilation (TV), particularly in Italy. Conclusions: Palliative care services are often involved in the care of people with ALS, but the extent and timing of involvement varies. The use of clinical guidelines and education on palliative care for neurology services may encourage collaboration, for the benefit of people with ALS and their families.