Decision Making in Multiple Sclerosis: Theory to Practice

2006 ◽  
Vol 8 (4) ◽  
pp. 113-120 ◽  
Author(s):  
Linda Morgante ◽  
Gail Hartley ◽  
Diane Lowden ◽  
Marie Namey ◽  
Theresa LaRocca ◽  
...  

Multiple sclerosis (MS) is an uncertain disease that manifests itself in neurological symptoms unique to each individual. People with MS and their families experience the day-to-day variability of the disease and often face difficult decisions regarding their care. Decisions include opting for a disease-modifying therapy soon after the diagnosis of MS is confirmed, choosing various pharmaceutical and nonpharmaceutical treatments for managing the symptoms that result, changing therapies and selecting alternatives when prescribed treatments are not successful, and determining whether to enter a clinical trial of a promising medication. When new therapies become available, nurses are faced with the important task of clarifying expectations, helping patients understand the risks and benefits of the new agent and, if appropriate, the rationale for continuing on their current regimen rather than switching therapies. Patients should be taught to appraise how they are doing on their current treatment and then weigh the evidence of something new in the light of their personal disease course and information available from the media and from peers. A framework for helping patients and families to make complicated decisions is an important step in continuing to provide high-quality care. This can be considered a new domain of MS nursing—one that includes consideration of the patient's hopes and dreams combined with the reality of the evidence. Principles of adult learning, cultural sensitivity, and state-of-the-art nursing knowledge are needed by MS nurses more than ever. The future of MS treatment is one of optimism despite its complexity.

2018 ◽  
Vol 89 (6) ◽  
pp. A26.2-A26
Author(s):  
Helmut Butzkueven ◽  
Jeremy Hobart ◽  
Amy Bowen ◽  
Lucy Eberhard ◽  
George Pepper ◽  
...  

IntroductionThe importance of prompt intervention in multiple sclerosis (MS) was described in the widely endorsed report, Brain health: time matters in multiple sclerosis.1 The present study aimed to define standards for the timing of key steps in the care pathway.MethodsAn international group of 29 MS neurologists was recruited from regions with high MS prevalence to participate in a modified Delphi process. Across five rounds, they defined ‘core’, ‘achievable’ and ‘aspirational’ time frames (to reflect a minimum, good and high standard of MS care, respectively). A 31-member Reviewing Group of MS nurses, experts with MS and allied healthcare professionals reviewed the results and provided feedback to four Chairs.ResultsConsensus was reached (≥75% agreement; n=21) on core, achievable and aspirational time frames for events spanning the MS care pathway. Here, we will present 21 achievable standards related to referral, diagnosis, treatment decisions, monitoring and managing new symptoms. For example, the Panel agreed that most MS teams should be aiming to1 complete a diagnostic workup for MS within 4 weeks of a patient being referred to a neurologist,2 assess patient eligibility for a suitable disease-modifying therapy within 3 weeks of diagnosis,3 perform follow-up clinical evaluations every 6 months, and4 offer an annual MRI scan.ConclusionThese standards will inform tools for clinics and people with MS and act as a potential future benchmark for established and developing MS clinics across the globe aiming to deliver the highest quality care.Reference. Giovannoni G, et al. Mult Scler Relat Disord2016;9(Suppl 1):S5–S48.


2018 ◽  
Vol 37 (7) ◽  
pp. 680-690 ◽  
Author(s):  
Jared M. Bruce ◽  
David P. Jarmolowicz ◽  
Sharon Lynch ◽  
Joanie Thelen ◽  
Seung-Lark Lim ◽  
...  

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.


2020 ◽  
pp. 135245852095231 ◽  
Author(s):  
Agostino Riva ◽  
Valeria Barcella ◽  
Simone V Benatti ◽  
Marco Capobianco ◽  
Ruggero Capra ◽  
...  

Background: Patients with multiple sclerosis (MS) are at increased risk of infection. Vaccination can mitigate these risks but only if safe and effective in MS patients, including those taking disease-modifying drugs. Methods: A modified Delphi consensus process (October 2017–June 2018) was used to develop clinically relevant recommendations for making decisions about vaccinations in patients with MS. A series of statements and recommendations regarding the efficacy, safety and timing of vaccine administration in patients with MS were generated in April 2018 by a panel of experts based on a review of the published literature performed in October 2017. Results: Recommendations include the need for an ‘infectious diseases card’ of each patient’s infectious and immunisation history at diagnosis in order to exclude and eventually treat latent infections. We suggest the implementation of the locally recommended vaccinations, if possible at MS diagnosis, otherwise with vaccination timing tailored to the planned/current MS treatment, and yearly administration of the seasonal influenza vaccine regardless of the treatment received. Conclusion: Patients with MS should be vaccinated with careful consideration of risks and benefits. However, there is an urgent need for more research into vaccinations in patients with MS to guide evidence-based decision making.


2012 ◽  
Vol 18 (2) ◽  
pp. 209-219 ◽  
Author(s):  
Martin S. Weber ◽  
Til Menge ◽  
Klaus Lehmann-Horn ◽  
Helena C. Kronsbein ◽  
Uwe Zettl ◽  
...  

Sign in / Sign up

Export Citation Format

Share Document