scholarly journals Progressive Multifocal Leukoencephalopathy Risk Perception in Patients Considering Natalizumab for Multiple Sclerosis

2021 ◽  
Vol preprint (2021) ◽  
pp. 0000-0000
Author(s):  
Regina Berkovich ◽  
Jonathan Eskenazi ◽  
Aida Yakupova ◽  
Evan Lawrence Riddle

Abstract Background: Progressive multifocal leukoencephalopathy (PML) remains a concern when considering natalizumab for multiple sclerosis (MS) treatment. Extensive research has identified factors that increase PML risk, and it is important that providers and patients accurately understand risk to make appropriate benefit-risk decisions. Methods: One hundred adult US patient-candidates for natalizumab therapy were questioned about their PML risk perception, the maximum PML risk they deemed acceptable, and sources of information used to understand risk. Differences in group distributions were compared. Results: Patients estimated their potential PML risk from 0.1% to 87% (mean, 31.5%). Maximum PML risk deemed acceptable ranged from 0.1% to 45% (mean, 14.5%). Actual risk (mean, 0.01%), based on published risk estimates, was calculated as a function of time receiving therapy, anti–John Cunningham virus antibody index, and previous use of immunosuppressants. The sexes perceived their risks similarly and had similar risk acceptance. Patient perception of PML risk increased with age, whereas willingness to accept risk remained similar among all ages. Higher levels of education correlated with more accurate risk perception and lower risk tolerance. Neither risk perception nor tolerance was correlated with disability level. Sixty-three percent of patients indicated that their primary/referring physician’s concern level regarding potential risk of PML during the benefit-risk discussion was their main source of information about risk. Conclusions: Patients with MS substantially overestimated their PML risk, often by three orders of magnitude. Patients with MS could benefit from accurate risk education, and providers could play an essential role in presenting PML risk information in a manner understandable to each individual patient.

2018 ◽  
Vol 76 (1) ◽  
pp. 6-12
Author(s):  
Denis Bernardi Bichuetti ◽  
Carolina Azze Franco ◽  
Isaac Elias ◽  
Andreia C. R. Mendonça ◽  
Lorraine Fiama Diniz Carvalho ◽  
...  

ABSTRACT The perception of multiple sclerosis (MS) severity and risk associated with therapies might influence shared decision making in different countries. We investigated the perception of MS severity and factors associated with risk acceptance in Brazil in 96 patients with relapsing-remitting MS using a standardized questionnaire and compared this with two European cohorts. Multiple sclerosis was perceived as a very severe disease and the risk of developing progressive multifocal leukoencephalopathy due to natalizumab was seen as moderate to high. Seventy-six percent considered a risk of 1:1,000, or higher, an impediment for natalizumab use. Older age was the only variable associated with higher risk acceptance and our patients showed a more conservative profile than German and Spanish patients. Our patients perceived MS severity and progressive multifocal leukoencephalopathy risk similarly to elsewhere, but their willingness to take risks was more conservative. This should be considered when discussing therapeutic options and it might have an impact on guideline adaptations.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Maureen O’Brien Pott ◽  
Anissa S. Blanshan ◽  
Kelly M. Huneke ◽  
Barbara L. Baasch Thomas ◽  
David A. Cook

Abstract Background CPD educators and CME providers would benefit from further insight regarding barriers and supports in obtaining CME, including sources of information about CME. To address this gap, we sought to explore challenges that clinicians encounter as they seek CME, and time and monetary support allotted for CME. Methods In August 2018, we surveyed licensed US clinicians (physicians, nurse practitioners, and physician assistants), sampling 100 respondents each of family medicine physicians, internal medicine and hospitalist physicians, medicine specialist physicians, nurse practitioners, and physician assistants (1895 invited, 500 [26.3%] responded). The Internet-based questionnaire addressed barriers to obtaining CME, sources of CME information, and time and monetary support for CME. Results The most often-selected barriers were expense (338/500 [68%]) and travel time (N = 286 [57%]). The source of information about CME activities most commonly selected was online search (N = 348 [70%]). Direct email, professional associations, direct mail, and journals were also each selected by > 50% of respondents. Most respondents reported receiving 1–6 days (N = 301 [60%]) and $1000–$5000 (n = 263 [53%]) per year to use in CME activities. Most (> 70%) also reported no change in time or monetary support over the past 24 months. We found few significant differences in responses across clinician type or age group. In open-ended responses, respondents suggested eight ways to enhance CME: optimize location, reduce cost, publicize effectively, offer more courses and content, allow flexibility, ensure accessibility, make content clinically relevant, and encourage application. Conclusions Clinicians report that expense and travel time are the biggest barriers to CME. Time and money support is limited, and not increasing. Online search and email are the most frequently-used sources of information about CME. Those who organize and market CME should explore options that reduce barriers of time and money, and creatively use online tools to publicize new offerings.


2018 ◽  
Vol 76 (9) ◽  
pp. 588-591 ◽  
Author(s):  
Luciana Prats Branco ◽  
Tarso Adoni ◽  
Samira Luisa Apostolos-Pereira ◽  
Joseph Bruno Bidin Brooks ◽  
Eber Castro Correa ◽  
...  

ABSTRACT Treatment options for multiple sclerosis (MS) have changed over the last few years, bringing about a new category of drugs with more efficient profiles. However, these drugs have come with a whole new profile of potential adverse events that neurologists have to learn well and quickly. One of the most feared complications of these MS treatments is progressive multifocal leukoencephalopathy caused by the reactivation of the John Cunningham virus (JCV). Objective: To identify the serologic profile of JCV in patients with MS. Methods: Data on serum antibodies for JCV were obtained using the enzyme-linked immunosorbent assay provided by the STRATIFY-JCV program. Results: A total of 1,501 blood tests were obtained from 1,102 patients with MS. There were 633 patients (57.1%) who were positive for antibodies for JCV and 469 patients who were negative (42.9%). Twenty-three patients became positive after initially having negative JCV antibody status. The rate of seroconversion was 18.5% over 22 months. Conclusion: The JCV serologic profile and seroconversion in Brazilian patients were similar to those described in other countries.


2009 ◽  
Vol 5 (1-2 (6)) ◽  
pp. 251-261
Author(s):  
Sergey Vardanyan

The history of Armenians has been accompanied with struggles against forced Islamization. The Islamized Hamshen-Armenians are of particular interest in this regard. The present article provides solid evidence about Islamized Armenians in general and those in the village of Khevak in particular, making reference to new sources of information that confirm the ideas stated.


Author(s):  
Mahan Shafie ◽  
Mahsa Mayeli ◽  
Hamed Hosseini ◽  
Mahnaz Ashoorkhani

COVID-19 pandemic obligated applying population-level behavioral modifications to effectively prevent the spread of the disease. This necessitated investigating those measures that determine population behavior. Herein we have studied risk perception and information exposure that are among those determinants in Iran. 402 cases from medical sciences students were enrolled during the last week of September 2020. Using an online questionnaire, risk perception and sources of information about COVID-19 were investigated. Although most students considered COVID-19 preventable, merely a few considered the disease curable. A higher risk was perceived concerning the families compared to themselves. Moreover, most of them believed the prognosis good even in high-risk patients. Social media was the most informative source used; however, health professionals were considered the most reliable. The risk perception was equal between those diagnosed with COVID-19 or had a family member diagnosed compared to those without such exposure in most questions. Also, no significant difference was observed in risk perception between those students with serious underlying medical conditions and those without one regarding most items. Lastly, major and grade were the most significant demographic contributors to the risk perception. Moderate risk was perceived overall among the cases in which major and grade were the only remarkable demographic contributors. Unexpectedly, underlying medical history was not significantly correlated with the perceived risk. Lastly, previous COVID-19 exposure merely altered the curability and preventability perception.


2021 ◽  
Author(s):  
◽  
Liv Henrich

<p>People tolerate different levels of risk from different hazards in their day-to-day life. Perceptions of risks and the amount of risk mitigation people desire for different hazards vary. Previous research shows that the psychometric properties of different hazards predict the level of risk people tolerate for various hazards, but not for earthquakes. Risk tolerance is likely to also be affected by factors other than the psychometric properties of hazards. This research tested how earthquakes score on psychometric risk properties compared to five other hazards, and aimed to replicate previous research on the risk factors predicting risk tolerance. Secondly, the research aimed to test if other factors, namely framing effects, risk perception and fatalistic thinking predict risk tolerance for earthquakes. In Study 1, participants from Wellington, New Zealand (N = 139) rated six different hazards (nuclear power, smoking, alcohol, driving, flying and earthquakes) on several risk characteristics and measures of risk tolerance. The results showed that the different hazards were perceived differently in terms of risk tolerance and that participants thought different risk mitigation actions were appropriate for the six hazards. Factor analysis showed that factors derived from risk characteristics did not predict risk tolerance. Study 2 (N = 173) assessed the effects of framing messages, risk perception and fatalism on risk tolerance (judgments about the firmness of the legislation; willingness to pay tax) and judgments about who should pay. The frames had an effect on participants’ concern about the risk, but did not affect the other measures. Generally participants thought that the Government should pay for strengthening buildings, however, those participants who perceived damage as preventable (fatalism measure) thought that private owners should pay for strengthening.</p>


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