Introduction We present international consensus recommendations for improving diagnosis, management and treatment access in multiple sclerosis (MS). Our vision is that these will be used widely among those committed to creating a better future for people with MS and their families. Methods Structured discussions and literature searches conducted in 2015 examined the personal and economic impact of MS, current practice in diagnosis, treatment and management, definitions of disease activity and barriers to accessing disease-modifying therapies (DMTs). Results Delays often occur before a person with symptoms suggestive of MS sees a neurologist. Campaigns to raise awareness of MS are needed, as are initiatives to improve access to MS healthcare professionals and services. We recommend a clear treatment goal: to maximize neurological reserve, cognitive function and physical function by reducing disease activity. Treatment should start early, with DMT and lifestyle measures. All parameters that predict relapses and disability progression should be included in the definition of disease activity and monitored regularly when practical. On suboptimal control of disease activity, switching to a DMT with a different mechanism of action should be considered. A shared decision-making process that embodies dialogue and considers all appropriate DMTs should be implemented. Monitoring data should be recorded formally in registries to generate real-world evidence. In many jurisdictions, access to DMTs is limited. To improve treatment access the relevant bodies should consider all costs to all parties when conducting economic evaluations and encourage the continuing investigation, development and use of cost-effective therapeutic strategies and alternative financing models. Conclusions The consensus findings of an international author group recommend a therapeutic strategy based on proactive monitoring and shared decision-making in MS. Early diagnosis and improved treatment access are also key components.

Brain health: time matters in multiple sclerosis

The emergence of high-efficacy therapies for multiple sclerosis (MS), which target inflammation more effectively than traditional disease-modifying therapies, has led to a shift in MS management towards achieving the outcome assessment known as no evidence of disease activity (NEDA). The most common NEDA definition, termed NEDA-3, is a composite of three related measures of disease activity: no clinical relapses, no disability progression, and no radiological activity. NEDA has been frequently used as a composite endpoint in clinical trials, but there is growing interest in its use as an assessment tool to help patients and healthcare professionals navigate treatment decisions in the clinic. Raising awareness about NEDA may therefore help patients and clinicians make more informed decisions around MS management and improve overall MS care. This review aims to explore the potential utility of NEDA as a clinical decision-making tool and treatment target by summarizing the literature on its current use in the context of the expanding treatment landscape. We identify current challenges to the use of NEDA in clinical practice and detail the proposed amendments, such as the inclusion of alternative outcomes and biomarkers, to broaden the clinical information captured by NEDA. These themes are further illustrated with the real-life perspectives and experiences of our two patient authors with MS. This review is intended to be an educational resource to support discussions between clinicians and patients on this evolving approach to MS-specialized care. Recent progress in multiple sclerosis (MS) has led to the development of new treatments, known as high-efficacy therapies. Compared with previous treatments, high-efficacy therapies are better at managing visible inflammation of the central nervous system, a main cause of worsening symptoms early on in people living with MS. Treatment with high-efficacy therapies means many people with MS may achieve better outcomes than previously possible. One such outcome is the set of criteria known as no evidence of disease activity (NEDA). Achieving NEDA-3, the most commonly used NEDA criteria, means that people exhibit no clinical relapses, no worsening of physical symptoms, and no visible disease activity on a magnetic resonance imaging scan. Researchers have studied NEDA as an outcome in MS clinical trials, but it may be useful in clinical practice as a tool for doctors to measure a person’s disease progression and response to treatment. This could help to inform important decisions around treatment selection and improve overall care for people with MS. This review explores the available information about NEDA to understand its potential to support clinical decision-making and patient evaluations. We discuss the barriers to NEDA being used in clinical practice and the ways the criteria may change to capture a broader range of clinical information from the patient. These topics are presented alongside the real-life perspectives and experiences of our two patient authors with MS. This review is meant to be an educational resource to assist conversations about NEDA between clinicians and patients in everyday clinical practice. 

No Evidence of Disease Activity (NEDA) as a Clinical Assessment Tool for Multiple Sclerosis: Clinician and Patient Perspectives [Narrative Review].

/pdf/sroi-em-impacto-clinico-asistencial-economico-y-social-del-5aini5k7y5.pdf

SROI-EM. Impacto clínico, asistencial, económico y social del abordaje ideal de la Esclerosis Múltiple en comparación con el abordaje actual

INTRODUCTION
We present international consensus recommendations for improving diagnosis, management and treatment access in multiple sclerosis (MS). Our vision is that these will be used widely among those committed to creating a better future for people with MS and their families.


METHODS
Structured discussions and literature searches conducted in 2015 examined the personal and economic impact of MS, current practice in diagnosis, treatment and management, definitions of disease activity and barriers to accessing disease-modifying therapies (DMTs).


RESULTS
Delays often occur before a person with symptoms suggestive of MS sees a neurologist. Campaigns to raise awareness of MS are needed, as are initiatives to improve access to MS healthcare professionals and services. We recommend a clear treatment goal: to maximize neurological reserve, cognitive function and physical function by reducing disease activity. Treatment should start early, with DMT and lifestyle measures. All parameters that predict relapses and disability progression should be included in the definition of disease activity and monitored regularly when practical. On suboptimal control of disease activity, switching to a DMT with a different mechanism of action should be considered. A shared decision-making process that embodies dialogue and considers all appropriate DMTs should be implemented. Monitoring data should be recorded formally in registries to generate real-world evidence. In many jurisdictions, access to DMTs is limited. To improve treatment access the relevant bodies should consider all costs to all parties when conducting economic evaluations and encourage the continuing investigation, development and use of cost-effective therapeutic strategies and alternative financing models.


CONCLUSIONS
The consensus findings of an international author group recommend a therapeutic strategy based on proactive monitoring and shared decision-making in MS. Early diagnosis and improved treatment access are also key components.

Brain health: time matters in multiple sclerosis.

Background and purpose The aim of this study was to gain insights and understanding into the lived experience of relapsing remitting multiple sclerosis (RRMS) in order to better inform patient-centerd nursing and healthcare. Methods This qualitative study used life history methodology, a form of focused ethnography, to explore the life history of 13 study participants living with RRMS. Semi-structured interviews were transcribed and analysed using thematic analysis. Findings A total of eight key themes emerged, explaining the journey of living with RRMS. Commencing with "Piecing Together the Puzzle" of symptoms at the beginning of the RRMS journey, followed by "(Re)defining ME now that I have RRMS," "Battling the Demons," the experiences of "Surplus Suffering," negotiating "High Invisibility," gaining control by "Taming the Beast," learning "The DMT Dance," and ultimately "Holding Hands with Hope," expressing hope and practising purposeful positivity. Implications for practice The eight key themes of living with RRMS were reflective of the ebbs and flows of life. By gaining these insights into the world of people living with RRMS, it is anticipated that clinical nursing care and quality of life for people living with this chronic neurological disease may be improved.

/pdf/taming-the-beast-exploring-the-lived-experience-of-relapsing-3opbs2b897.pdf

"Taming the Beast": Exploring the Lived Experience of Relapsing Remitting Multiple Sclerosis Using a Life History Approach.

Background: Multiple sclerosis (MS) is a disease of the central nervous system. There is no cure for MS but there are treatments available which reduce the severity, frequency and duration of relapses, known as disease modifying therapies (DMTs). Aim: The objective of the study was to gain insight into the factors influencing choice of DMT when starting or switching therapy. Methodology: Two separate surveys of MS nurses and people with MS taking a DMT were designed by a group of MS nurses; they were funded and supported by Novartis Pharmaceuticals UK Ltd and implemented in 2014. Results: Patients clearly stated that while highly valuing their MS nurse and neurologist, they wanted more clarity around the effectiveness, side effects and risks of DMTs. Some 84% of patients wanted to be part of the decision-making process regarding their treatment. Conclusion: Shared decision making underpins effective disease management and is particularly important in relation to DMT prescribing. The importance of the MS n...

Multiple sclerosis and disease modifying therapies: results of two UK surveys on factors influencing choice

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Multiple sclerosis and disease modifying therapies: results of two UK surveys on factors influencing choice