scholarly journals Prognostic information for people with MS: Impossible or inevitable?

2018 ◽  
Vol 26 (7) ◽  
pp. 771-773 ◽  
Author(s):  
Christoph Heesen ◽  
Antonio Scalfari ◽  
Ian Galea

Delivering prognostic information is a challenging issue in medicine and has been largely neglected in the past. A major reason has been a suspected nocebo effect of pessimistic estimates, although this is largely unproven. Among people with multiple sclerosis (MS), there is a strong unmet need to receive long-term prognostic information. This viewpoint discusses reasons for this blind spot in physicians’ attitude, foremost among which is the uncertainty of prognostic estimates. Possible strategies to move forward include tools to identify matching patients from large well-defined databases, to deliver an evidence-based individualized estimate of long-term prognosis, and its confidence interval, in a clinical setting.

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 599-600
Author(s):  
Tracy Mitzner ◽  
Elena Remillard ◽  
Kara Cohen ◽  
Jordan Chen

Abstract Tele-technologies may be able to increase access to evidence-based exercise interventions for adults aging with long-term mobility disabilities. This population experiences substantial barriers in attending such programs in person, including lack of transportation to classes, inaccessible buildings where classes are held, and lack of appropriate modifications offered for this population of older adults. It is critical to overcome such barriers to ensure this population has an opportunity to receive the benefits of evidence-based programs. In this study we are translating an in-person evidence-based tai chi intervention, Tai Chi for Arthritis, to an online platform using videoconferencing software for those aging with long-term mobility disabilities. We will describe our approach of including users from the target population and industry representatives (videoconferencing software developer, Tai Chi for Arthritis program developer as well as local master trainer) in the adaptation of the intervention and present the key findings from doing so.


2019 ◽  
Vol 15 (4) ◽  
pp. 180-183
Author(s):  
Maria Espasandin

Treating multiple sclerosis (MS) with alemtuzumab involves multiple dosing cycles and long-term safety monitoring. With the NHS being under increasing financial pressure, there is the potential for gaps to form between national guidelines for MS treatment and service provision, making it difficult for patients with MS who are eligible to receive treatments like alemtuzumab. In this article, we share our experiences of setting up an alemtuzumab infusion unit at The Royal London Hospital. We created a collaborative partnership with industry, based on the mutual goal of optimising access to alemtuzumab for all eligible patients who would like to receive it. This agreement involved the provision of additional nursing support and a roaming phlebotomy service by Sanofi Genzyme (formerly Genzyme), and careful planning of the hospital's support requirements on a month-by-month basis. The success of the partnership has been reflected by the complete clearance of the patient waiting list for alemtuzumab.


2020 ◽  
pp. 135245852096477
Author(s):  
Ricardo Kosch ◽  
Insa Schiffmann ◽  
Martin Daumer ◽  
Christian Lederer ◽  
Antonio Scalfari ◽  
...  

Background: Prognostic counselling is a sensitive issue in medicine and especially so in MS due to the highly heterogeneous disease course. However, people with MS (pwMS) seek prognostic information. The web-based ‘Evidence-Based Decision Support Tool in Multiple Sclerosis’ (EBDiMS) uses data of 717 patients from the London/Ontario cohort to calculate personalized long-term prognostic information. Objective: The aim of this study was to investigate the feasibility and effect of long-term prognostic counselling in pwMS using EBDiMS. Methods: Ninety consecutive pwMS were provided with personalized estimations of expected time to reach Expanded Disability Status Scale (EDSS) scores of 6 and 8 and time to conversion to secondary-progressive MS. Participants gave estimates on their own putative prognosis and rated the tool’s acceptability on six-step Likert-type scales. Results: Participants rated EBDiMS as highly understandable, interesting and relevant for patient–physician encounters, coping and therapy decisions. Although it provoked a certain degree of worry in some participants, 95% would recommend using the tool. Participants’ own prognosis estimates did not change significantly following EBDiMS. Conclusion: Long-term prognostic counselling using an online tool has been shown to be feasible in a clinical setting. EBDiMS provides pwMS with relevant, easy-to-understand, long-term prognostic information without causing relevant anxiety.


2018 ◽  
Vol 36 (4_suppl) ◽  
pp. 577-577
Author(s):  
Sally C Lau ◽  
Richard M. Lee-Ying ◽  
Davis Sam ◽  
Winson Y. Cheung

577 Background: With advances in diagnosis and treatment, many cancer patients survive more than 5 years. The care of these cancer survivors (CS) represent an area of unmet need. We aim to characterize the patterns of preventive care in colon CS compared to non-cancer controls (NCC) and identify areas of deficiencies within the context of a universal health care system. Methods: Adult patients with non-metastatic colon cancer treated at the BC Cancer Agency between 2000-2012 were included. An age and gender matched cohort constructed from the provincial database served as NCC. Areas of preventive care examined include vaccinations, cancer, osteoporosis and cardiovascular diseases (CVD) screening. Multivariate regressions were done to test for associations between CS and preventive care. Results: In total, 9381 colon CS and 47187 NCC, matched at a ratio of 1:5, were analyzed. Among CS, median age of diagnosis was 68, 58% were male and 47% had stage 3 disease. The median overall survivals were 12/10/8 years for stages 1/2/3 disease respectively. 61% of these survivors died from colon cancer, 12% from other cancers and 25% from non-cancer causes. Deaths from colon cancer are more common within 5 years of diagnosis, particularly stage 3 disease. CS were more likely to receive any preventive care. In CS compared to NCC, 90% vs 85%, 47% vs 39% and 53% vs 46% of eligible patients had CVD screening, cancer screening and other preventive care respectively. This remained significant in multivariate analyses (Table). Patients who were female, had higher income and resided in urban areas were more likely to receive screening. Among CS, patients > 65 years (OR1.2, p = 0.04 95%CI 1.0-1.4), females (OR 1.5, p < 0.01 95%CI 1.3-1.8) and stages 1 or 2 disease (OR 1.3, p < 0.01 95%CI 1.1-1.5) had higher uptake of screening. Conclusions: Many colon cancer patients are long term survivors. CS are more likely to receive screening than NCC but uptake is suboptimal in certain areas. Targeted education towards certain sub-groups such as males, ≤65 years, low income and rural area patients may improve long term health outcomes. [Table: see text]


2011 ◽  
Vol 2011 ◽  
pp. 1-5 ◽  
Author(s):  
Jose F. Varona

There is limited information about long-term prognosis of ischemic stroke in young adults. Giving the potentially negative impact in physical, social, and emotional aspects of an ischemic stroke in young people, providing early accurate long-term prognostic information is very important in this clinical setting. Moreover, detection of factors associated with bad outcomes (death, recurrence, moderate-to-severe disability) help physicians in optimizing secondary prevention strategies. The present paper reviews the most relevant published information concerning long-term prognosis and predictors of unfavorable outcomes of ischemic stroke affecting young adults. As a summary, we can conclude that, in the long term, stroke in the young adult increases slightly the risk of mortality, implies higher risk of future cardiovascular events, and determines functional limitations in a significant percentage of patients. Nevertheless, in every individual case the prognosis has to be considered depending on several factors (stroke subtype, initial severity, cardiovascular risk factors) that determine the long-term outcomes.


2019 ◽  
Vol 6 (Supplement_2) ◽  
pp. S834-S835
Author(s):  
Pierre-Jean Maziade ◽  
Daniel Lussier ◽  
Francoise Dubé

Abstract Background Hospitals use multiple concurrent prevention strategies to curb nosocomial C. difficile infection, but there are limited data on the long-term feasibility or safety of using a probiotic. Pierre-Le Gardeur Hospital, Québec, has been administering a probiotic comprised of Lactobacillus acidophilus CL1285, L. casei LBC80R and L. rhamnosus CLR2 since 2004 with documented results through March 31, 2014. Here we present an update for the past 5 years. Methods Several nosocomial infection prevention practices were running concurrently at the hospital. Adult inpatients treated with antibiotics from April 1, 2014 to March 31, 2019 were eligible to receive the probiotic. The hospital pharmacy ensured that each patient took the probiotic capsules (Bio-K+® 50 Billion) daily from the initiation of antibiotic use. Confirmed nosocomial cases of C. difficile infection were recorded and reported to the provincial public health agency. The rate of nosocomial CDI for this hospital was compared with other non-University affiliated hospitals in the health region with more than 110 beds and fewer than 45% of patients age 65 and older, and, to all other hospitals in the health system. Results Cumulatively over the past 15 years, more than sixty thousand antibiotic-treated adult inpatients took the probiotic daily during antibiotic use. Among 13 comparable hospitals, Pierre-Le Gardeur Hospital had the lowest rate of nosocomial CDI in 2014–2015, 2015–2016, 2016–2017, 2017–2018 and on average had the lowest rate for 2013–2018 (1.1 CDI cases per 10,000 patient-days). Compared with all hospitals in the Province of Quebec health system, N = 95, the hospital had the lowest nosocomial CDI rate on average for 2013–2018. No cases of Lactobacillus bacteremia were detected. Conclusion The overall infection prevention strategy has been highly effective, resulting in a consistently low rate of nosocomial CDI. We found that it is feasible to administer this probiotic to antibiotic-treated inpatients with few restrictions. No Lactobacillus infections were observed from any of the three strains of bacteria for this probiotic when given to more than sixty thousand adult inpatients. Disclosures All authors: No reported disclosures.


Neurology ◽  
2020 ◽  
Vol 94 (10) ◽  
pp. 456-457
Author(s):  
Mar Tintoré ◽  
Santiago Perez-Hoyos ◽  
Susana Otero-Romero

2010 ◽  
Vol 5 (1) ◽  
pp. 69 ◽  
Author(s):  
Dawn Langdon ◽  

Multiple sclerosis (MS) is characterised not only by physical disability but also by gradual cognitive impairment. A large proportion of patients exhibit signs of cognitive deficit that negatively affect their quality of life. Reduced processing speed is often seen with the disease and several tests have been developed to measure its severity, including the Paced Auditory Serial Addition Test (PASAT) and the Symbol Digit Modality Test (SDMT). Long-term memory function is also commonly impaired in MS and studies suggest problems in primary registration of information. Also affected are executive functions used in novel planning and problem-solving. To evaluate cognitive function, cognitive test batteries with varying effectiveness have been introduced. The correlation of cognitive performance with magnetic resonance imaging (MRI) results remains inconsistent as multiple pathologies lead to the observed impairments. Therefore, combinations of MRI data are most successful at predicting deficiencies. The efficacy of current MS treatments in terms of cognition is unclear, making their clinical evaluation a great unmet need; the same is true of universal, validated cognitive measures that can be easily administered to MS patients around the world.


Sign in / Sign up

Export Citation Format

Share Document