scholarly journals Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists

2010 ◽  
Vol 16 (12) ◽  
pp. 1507-1512 ◽  
Author(s):  
Christoph Heesen ◽  
Ingo Kleiter ◽  
Franziska Nguyen ◽  
Nina Schäffler ◽  
Jürgen Kasper ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Malignant Disease ◽  
Evidence Based ◽  
Shared Decision ◽  
Information Leaflet ◽  
Risks And Benefits ◽  
Natalizumab Treatment ◽  
Life Threatening ◽  
Multiple Sclerosis Patients ◽  
Do So

Background: Natalizumab is associated with the potentially life-threatening side-effect progressive multifocal leukoencephalopathy (PML). Little is known about patients’ and physicians’ risk estimates and attitudes towards natalizumab treatment. Methods: Consecutive natalizumab-treated patients ( n = 69) and neurologists ( n = 66) in two centres and cooperating private practices received an evidence-based three-page information leaflet about natalizumab-associated PML and an evaluation sheet. Results: After reading the information, patients were significantly more likely than physicians to intend continuation of natalizumab treatment and willing to accept higher risks of PML: 49% of physicians would stop treatment at a PML risk of 2 : 10,000 or lower, while only 17% of patients would do so ( p < 0.001). This difference could not be explained by risk calculation abilities or lack of understanding. Both groups overestimated natalizumab treatment effects. Conclusion: Patients had a significantly worse perception of multiple sclerosis as a malignant disease. We conclude that patients were willing to accept a higher risk of PML than neurologists. Coherent with their perception of risks and benefits, patients were also more willing to continue treatment. Open information about treatment-related risks is appreciated and might support shared decision making.

scholarly journals Fatal COVID-19 in an MS patient on natalizumab: A case report

2020 ◽  
Vol 6 (3) ◽  
pp. 205521732094293
Author(s):  
Kathryn Rimmer ◽  
Rebecca Farber ◽  
Kiran Thakur ◽  
Genna Braverman ◽  
Dina Podolsky ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Immune Cells ◽  
African American Woman ◽  
Fatal Case ◽  
American Woman ◽  
Multiple Risk Factors ◽  
Natalizumab Treatment ◽  
Obesity Hypertension ◽  
Multiple Sclerosis Patients ◽  
Peripheral Immune Cells

We report a fatal case of COVID-19 in a 51-year-old African American woman with multiple sclerosis on natalizumab. She had multiple risk factors for severe COVID-19 disease including race, obesity, hypertension, and elevated inflammatory markers, but the contribution of natalizumab to her poor outcome remains unknown. We consider whether altered dynamics of peripheral immune cells in the context of natalizumab treatment could worsen the cytokine storm syndrome associated with severe COVID-19. We discuss extended interval dosing as a risk-reduction strategy for multiple sclerosis patients on natalizumab, and the use of interleukin-6 inhibitors in such patients who contract COVID-19.

Natalizumab restores evoked potential abnormalities in patients with relapsing–remitting multiple sclerosis

2010 ◽  
Vol 17 (2) ◽  
pp. 198-203 ◽  
Author(s):  
Sven G Meuth ◽  
Stefan Bittner ◽  
Carola Seiler ◽  
Kerstin Göbel ◽  
Heinz Wiendl
Keyword(s):  
Multiple Sclerosis ◽  
Evoked Potentials ◽  
Motor Evoked Potentials ◽  
Sum Score ◽  
Relapsing Remitting ◽  
Natalizumab Treatment ◽  
Remitting Multiple Sclerosis ◽  
Sum Scores ◽  
Multiple Sclerosis Patients ◽  
Relapsing Remitting Multiple Sclerosis

Background and Objective: The objective of this study was to examine the effects of natalizumab on functional parameters assessed by evoked potentials (visual [VEP], somatosensory [SEP] and motor evoked potentials [MEP]) in a cohort study in relapsing–remitting multiple sclerosis patients. Methods: EP data of 44 patients examined 12 months prior to natalizumab treatment, at the timepoint of treatment initiation and 1 year later were compared. Sum scores (VEP, MEP, SEP) were evaluated and correlated with the Expanded Disability Status Scale. Results: Improvement of the VEP sum score was found in 33% of natalizumab-treated patients but only in 9% of the same patients prior to treatment ( p = 0.041). A comparable situation was found for SEP (improvement: 32% versus 5%; worsening: 11% versus 37%; p = 0.027). For MEP no significant differences were seen (improvement: 10% versus 18%; worsening: 5% versus 29%; p = 0.60). EP recordings (VEP = SEP > MEP) have the capacity to demonstrate treatment effects of natalizumab on a functional level. Conclusions: Natalizumab therapy increases the percentage of patients showing stable or even ameliorated electrophysiological parameters in the investigated functional systems.

Disappearance of cerebrospinal fluid oligoclonal bands after natalizumab treatment of multiple sclerosis patients

2011 ◽  
Vol 18 (7) ◽  
pp. 1038-1041 ◽  
Author(s):  
Felipe von Glehn ◽  
Alessandro S Farias ◽  
Augusto C Penalva de Oliveira ◽  
Alfredo Damasceno ◽  
Ana Leda F Longhini ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Central Nervous System ◽  
Cerebrospinal Fluid ◽  
Nervous System ◽  
Oligoclonal Bands ◽  
Natalizumab Treatment ◽  
The Central Nervous System ◽  
Immunologic Abnormality ◽  
Csf Oligoclonal Bands ◽  
Multiple Sclerosis Patients

Intrathecal immunoglobulin synthesis in an oligoclonal pattern is the most common immunologic abnormality detected in MS patients. Various treatments, such as immunomodulators and immunosuppressors, have not been found to modify it. Natalizumab hinders migration of encephalitogenic T-cells into the central nervous system (CNS), reducing inflammatory response. Its impact on CSF oligoclonal bands (OCBs) has not been demonstrated. This report describes its effect in four out of six patients with multiple sclerosis after a mean of 10 infusions: the CSF was negative for OCBs at the second lumbar puncture. In conclusion, natalizumab treatment can reduce CSF OCBs to undetectable levels, although the clinical significance of this observation is not yet known.

scholarly journals HERV-W/MRSV envelope transcripts detection in blood of multiple sclerosis patients after Natalizumab treatment

Retrovirology ◽  
2014 ◽  
Vol 11 (Suppl 1) ◽  
pp. P131
Author(s):  
Luiz HS Nali ◽  
Guilherme S Olival ◽  
Augusto CP de Oliveira ◽  
Jorge Casseb ◽  
Jose E Vidal ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Natalizumab Treatment ◽  
Multiple Sclerosis Patients

scholarly journals Short-term outcomes of pediatric multiple sclerosis patients treated with alemtuzumab at a Canadian University multiple sclerosis clinic

2020 ◽  
Vol 6 (2) ◽  
pp. 205521732092661
Author(s):  
David Jure Hunt ◽  
Anthony Traboulsee
Keyword(s):  
Multiple Sclerosis ◽  
Stable Disease ◽  
Expanded Disability Status Scale ◽  
Short Term ◽  
Pediatric Multiple Sclerosis ◽  
Risks And Benefits ◽  
Disability Status ◽  
Infusion Reactions ◽  
Multiple Sclerosis Patients

There is a lack of literature documenting the use of alemtuzumab in pediatric multiple sclerosis (MS) patients. Here we describe a 16-year-old and a 17-year-old patient receiving alemtuzumab and being followed for 37 months and 20 months, respectively. Both patients experienced a 1.0 decrease in Expanded Disability Status Scale since initial alemtuzumab infusion and had stable disease. No serious infusion reactions, infections, or definite relapses were recorded on follow-up. Alemtuzumab has been relatively well-tolerated and effective; however, larger, longer-term studies are necessary to understand the specific risks and benefits of alemtuzumab in pediatric MS.

scholarly journals Effects of Natalizumab Treatment on the Cerebrospinal Fluid Proteome of Multiple Sclerosis Patients

2013 ◽  
Vol 12 (3) ◽  
pp. 1101-1107 ◽  
Author(s):  
Marcel P. Stoop ◽  
Vaibhav Singh ◽  
Christoph Stingl ◽  
Roland Martin ◽  
Mohsen Khademi ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Cerebrospinal Fluid ◽  
Natalizumab Treatment ◽  
Multiple Sclerosis Patients

scholarly journals Relapsing-Remitting Multiple Sclerosis Patients' Experience with Natalizumab

2012 ◽  
Vol 14 (1) ◽  
pp. 39-44 ◽  
Author(s):  
Colleen E. Miller ◽  
Mary Karpinski ◽  
Mary Ann Jezewski
Keyword(s):  
Multiple Sclerosis ◽  
New York ◽  
Nurse Practitioners ◽  
Treatment Information ◽  
Increased Risk ◽  
Relapsing Remitting ◽  
Natalizumab Treatment ◽  
Multiple Sclerosis Patients ◽  
Patients Experience ◽  
Relapsing Remitting Multiple Sclerosis

This phenomenological investigation was undertaken to gain a better understanding of multiple sclerosis (MS) patients' experience with natalizumab (Tysabri; Biogen Idec Inc, Cambridge, MA) treatment and its impact on their quality of life (QOL). Twenty MS patients who were receiving natalizumab treatment were recruited by the physicians, nurse practitioners, nurses, and social worker of the William C. Baird Multiple Sclerosis Center in Buffalo, New York, between March 2009 and November 2009. Patients were invited to participate if they had relapsing-remitting MS, had received at least six treatments of natalizumab, and could articulate their experience. An interviewer obtained informed consent, gathered basic demographic information, and then tape-recorded the participants' accounts of their experience with natalizumab. The audio-recorded interviews were transcribed and de-identified before being submitted to the investigators for analysis. The Atlas.ti qualitative data analysis program (Scolari, Berlin, Germany) was used to manage the data. Patients found natalizumab easy to tolerate and effective; moreover, they described improvement in their QOL. Patients must weigh the benefits of control of their MS against the increased risk of developing progressive multifocal leukoencephalopathy with natalizumab treatment. Information from this study will be used to educate professionals involved in MS patient care as well as patients and families considering treatment with natalizumab.

scholarly journals Understanding magnetic resonance imaging in multiple sclerosis (UMIMS) and accompanying process evaluation: study protocol for a double-blind, randomized controlled trial using an evidence-based patient information website

2020 ◽  
Author(s):  
Insa Schiffmann ◽  
Magalie Freund ◽  
Eik Vettorazzi ◽  
Jan-Patrick Stellmann ◽  
Susanne Heyr-Borchelt ◽  
...  
Keyword(s):  
Magnetic Resonance Imaging ◽  
Multiple Sclerosis ◽  
Evidence Based ◽  
Shared Decision ◽  
Resonance Imaging ◽  
Specific Knowledge ◽  
Double Blind ◽  
Randomized Controlled ◽  
Secondary Endpoints ◽  
Negative Feelings

Abstract Background: While Magnetic Resonance Imaging (MRI) plays a major role in the lives of people with multiple sclerosis (pwMS), studies have shown that MRI-specific knowledge in pwMS is limited. Moreover, poor knowledge was associated with negative feelings towards MRI (e.g. anxiety concerning MRI scan). Because information sources about MRI in MS for pwMS are not available, we designed and evaluated an evidence-based online educational platform about MRI in MS called “Understanding MRI in MS” (UMIMS). Based on a pilot study in 104 subjects, an educational intervention was found to be feasible and effective. We hypothesize, that MRI-specific knowledge can be increased by using UMIMS and that, subsequently, negative feelings towards MRI will be reduced and shared decision making competences increased.Methods: This randomized, controlled, double-blinded trial will recruit n=120 pwMS. The intervention group will receive access to UMIMS. The control group will get access to a specifically developed control website, which visually imitates UMIMS, and contains the standard information available by several MS self-help organisations. The change in MRI-specific knowledge assessed via the MRI-risk knowledge questionnaire (MRI-RIKNO) after the intervention is the primary endpoint at 2 weeks. Several secondary endpoints will be assessed at different timepoints throughout the study, e.g. emotions towards MRI, autonomy preferences, threat by MS and shared decision-making competences. The study includes a process evaluation.Discussion: The aim of this randomized, controlled, double-blind trial recruiting n=120 pwMSis to assess the effect of the evidence-based online educational tool “UMIMS” on MRI-specific knowledge.Additonally, secondary endpoints (e.g. emotions towards MRI) will be assessed and a process evaluation will be included.Trial registration: Clinicaltrials.gov, NCT03872583, registration date: 13th March 2019.

Sign in / Sign up

Export Citation Format

Share Document