Multiple Sclerosis Progression Discussion Tool: Usability and Usefulness in Clinical Practice (Preprint)

2021 ◽  
Author(s):  
Tjalf Ziemssen ◽  
Gavin Giovannoni ◽  
Enrique Alvarez ◽  
Virender Bhan ◽  
Carrie Hersh ◽  
...  

BACKGROUND A digital tool (Multiple Sclerosis Progression Discussion tool, MSProDiscuss) was developed to facilitate a discussion between a healthcare professional (HCP) and patient in evaluating early, subtle signs of multiple sclerosis (MS) disease progression. OBJECTIVE To report findings on the usability and usefulness testing of the MSProDiscuss tool in the real-world clinical setting. METHODS In this cross sectional, online survey, HCPs across 34 countries completed an initial individual questionnaire (comprising 7 questions on comprehensibility, usability and usefulness after using MSProDiscuss during each patient consultation) and a final questionnaire (comprising 13 questions on comprehensibility, usability and usefulness, and integration and adoption into clinical practice to capture their overall experience on using the tool). Responses were provided on a 5-point Likert scale. All analyses were descriptive, and no statistical comparisons were made. RESULTS In total, 301 HCPs tested the tool in 6974 MS patients, of which 77% were relapsing remitting MS patients including those suspected to be transitioning to secondary progressive MS. The time taken to complete MSProDiscuss was 1-4 minutes in 97% (initial) to 98% (final) of the cases. In 94% (initial) to 97% (final) cases, HCPs agreed (4 or 5 on the Likert scale) that patients were able to comprehend the questions from the tool. HCPs were willing to use the tool again in the same patient 91% (initial) of the cases. MSProDiscuss was useful in discussing MS symptoms and their impact on daily activities (88% initial and 92% final) and cognitive function (79% for both initial and final) and in discussing progression in general (88% initial and 90% final). While completing the final questionnaire, 95% of HCPs agreed that the questions were similar to those asked in regular consultation and the tool helped to better understand the impact of MS symptoms on daily activities (91%) and cognitive function (80%). Overall, 92% of the HCPs would recommend MSProDiscuss to a colleague, and 86% are willing to integrate it into their clinical practice. CONCLUSIONS MSProDiscuss is a usable and useful tool to facilitate a physician-patient discussion on disease progression in daily clinical practice. Most HCPs agreed that the tool is easy to use and were willing to integrate MSProDiscuss into their daily clinical practice.

2019 ◽  
Vol 22 (4) ◽  
pp. 158-164
Author(s):  
Ann D. Bass ◽  
Bart Van Wijmeersch ◽  
Lori Mayer ◽  
Mathias Mäurer ◽  
Aaron Boster ◽  
...  

Abstract Background: The vsMS survey was conducted to better understand the negative effects of fatigue, cognitive impairment, emotional burden, and decreased physical functioning on the personal, professional, and social lives of individuals with multiple sclerosis (MS). Methods: The vsMS survey was an online survey conducted in Australia, Canada, France, Italy, Spain, the United Kingdom, and the United States that assessed the impact of MS on individuals’ daily activities, emotional well-being, relationships, and employment. Results: The survey included 1075 participants with relapsing-remitting MS. Almost 42% of participants reported that their ability to perform and manage daily activities had worsened during the previous 2 years. More than 50% reported limitations in daily activities due to fatigue, physical weakness, problems with balance/coordination, heat/cold sensitivity, memory problems, numbness/tingling, trouble concentrating, impaired movement/muscle stiffness, and impaired sleeping. Participants also reported a negative effect on emotional and social factors, including self-esteem, general outlook, well-being, maintaining/starting relationships, ability to progress in their career/keep their job, and ability to cope with life roles. Conclusions: These data highlight the importance of addressing the impact of MS and the social and emotional disease burdens on daily activities when planning the care of patients with MS.


2021 ◽  
pp. 135245852110053
Author(s):  
Emilio Portaccio ◽  
Mattia Fonderico ◽  
Bernhard Hemmer ◽  
Tobias Derfuss ◽  
Bruno Stankoff ◽  
...  

Background: The spread of Coronavirus disease-19 (COVID-19) poses unique challenges in the management of people with multiple sclerosis (PwMS). Objectives: To collect data about the impact of COVID-19 emergency on access to care for PwMS and on MS treatment practices. Methods: Between March and July 2020, the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) promoted an online survey covering patient access to care, management of relapses and visits, disease-modifying therapy (DMT) and experience with COVID-19. Results: Three-hundred and sixty neurologists from 52 countries (68% from Europe) completed the survey. 98% reported COVID-19-related restrictions. Telemedicine was adopted to overcome the limited access to care and was newly activated (73%) or widely implemented (17%). 70% reported changes in DMT management. Interferons and glatiramer were considered safe. Dimethyl fumarate, teriflunomide and fingolimod were considered safe except for patients developing lymphopenia. No modifications were considered for natalizumab in 64%, cladribine in 24%, anti-CD20 in 22% and alemtuzumab in 17%; 18% (for alemtuzumab and cladribine) and 43% (for anti-CD20) considered postponing treatment. Conclusion: The ECTRIMS survey highlighted the challenges in keeping standards of care in clinical practice. Telemedicine clearly needs to be implemented. Gathering data on DMT safety will remain crucial to inform treatment decisions.


2018 ◽  
Vol 12 (1) ◽  
pp. 31-40 ◽  
Author(s):  
Christos Bakirtzis ◽  
Panagiotis Ioannidis ◽  
Lambros Messinis ◽  
Grigorios Nasios ◽  
Elina Konstantinopoulou ◽  
...  

About half of patients with multiple sclerosis exhibit cognitive impairment which negatively affects their quality of life. The assessment of cognitive function in routine clinical practice is still undervalued, although various tools have been proposed for this reason. In this article, we describe the potential benefits of implementing cognitive assessment tools in routine follow -ups of MS patients. Early detection of changes in cognitive performance may provide evidence of disease activity, could unmask depression or medication side-effects and provide suitable candidates for cognitive rehabilitation. Since apathy and cognitive deficiencies are common presenting symptoms in Progressive Multifocal Leukoencephalopathy, we discuss the utility of frequent monitoring of mental status in multiple sclerosis patients at increased risk. In addition, we propose a relevant algorithm aiming to incorporate a systematic evaluation of cognitive function in every day clinical practice in multiple sclerosis.


2010 ◽  
Vol 17 (2) ◽  
pp. 234-240 ◽  
Author(s):  
JJ Kragt ◽  
JM Nielsen ◽  
FAH van der Linden ◽  
CH Polman ◽  
BMJ Uitdehaag

Background: To assess disease progression in multiple sclerosis (MS) several outcome measures are available. The interrelation of changes on different scales has not been studied extensively and the concept of combining scales has only recently been introduced in MS. Objective: To explore combining different clinical outcome measures in the evaluation of disease progression in MS. Methods: In 553 patients we studied the presence of relevant changes according to standard definitions on the Expanded Disability Status Scale (EDSS), Nine-Hole Peg Test (9HPT), Timed 25-Foot Walk (T25FW) and the Multiple Sclerosis Impact Scale (MSIS-29). We examined ‘exclusive worsening’ (worsening on one measure while not worsening on any other measure) and ‘opposing changes’ (worsening on one measure while improving on another measure). Finally, we investigated the impact of combining assessments. Results: Based on the EDSS alone, 140 patients progressed. However, almost twice as many (275) showed worsening on any of the clinical outcome measures. Exclusive worsening was observed in 37 patients on the EDSS, 13 on the 9HPT, 39 on the T25FW and 44 on the MSIS physical. Of all worsened patients 76 (28%) showed opposing changes, a phenomenon predominantly observed when combining physician-based and patient-derived outcome measures. Conclusion: When assessing disease progression in MS, sensitivity to change can be increased by combining different outcome measures. The added value is especially present when combining measures from different perspectives. However, further research is needed to evaluate the optimal way to combine outcome measures before implementing this strategy in clinical studies.


US Neurology ◽  
2009 ◽  
Vol 05 (01) ◽  
pp. 50
Author(s):  
Francois Bethoux ◽  

Ambulation is frequently affected by multiple sclerosis (MS), and is one of the most valued neurological functions among individuals with MS. While walking speed and walking distance have been used for decades as indicators of disease progression, other aspects of gait disturbance are not routinely assessed, and the impact of walking limitations on the daily activities and quality of life of patients is not fully understood. Recently, rehabilitation techniques, devices, and medications that aim directly at improving walking performance have been tested in individuals with MS. At the same time, clinician-rated and patient-reported measures of ambulation are being validated in this patient population. As a consequence of these advances, clinicians can draw from a growing body of evidence to enhance decision-making and outcome measurement when trying to help MS patients fight one of the most visible consequences of their disease.


Burns ◽  
2012 ◽  
Vol 38 (7) ◽  
pp. 960-966 ◽  
Author(s):  
Harald F. Selig ◽  
David B. Lumenta ◽  
Michael Giretzlehner ◽  
Marc G. Jeschke ◽  
Dominic Upton ◽  
...  

2020 ◽  
Author(s):  
Islam Abd Alraheam ◽  
Mays A. Alashqar ◽  
Susan Hattar ◽  
Abeer AlHadidi ◽  
Alaa Alhaddad ◽  
...  

Abstract Background. To study self-perceived preparedness of dental school graduates and the impact of COVID-19 on their preparedness. Method. An online survey was designed and sent electronically to students who were graduating in 2020, dentists who graduated in 2019 and were doing their prelicensure training, and dentists who graduated before 2019. Four- point Likert scale was used to assess participants’ perception.Results. There were 209 participants responded to the online questionnaire. The mean total preparedness score (TPS) for the 209 participants was 97.6 (SD ±9.7) with a range of 69 to 120. The mean TPS of the different classes of participants was 99.5 for the class graduated before 2019, 98.1 for the 2020 class, and 95.1 for the 2019 class. Participants felt they are confident and extremely confident doing the majority of the required competencies. Weakness was mainly reported in surgical extraction for 2020 graduates due to the 8 weeks loss of their training. COVID-19 had considerable impact on 59.7% of the participants and marginal to no impact on 40.3%. The highest prevalence of those who thought it had some to severe impact on their confidence were those who graduated in year 2019 (73.4%).Conclusions. The graduates of University of Jordan felt confident in performing the majority of general dentistry procedures. COVID-19 pandemic negatively impacted the confidence of all the classes of participants even those graduated before 2019.


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