Rethinking MS in Europe: Prioritising Timely, Integrated Care for People with Multiple Sclerosis (original) (raw)
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Rethinking MS in Europe: Prioritizing integrated services for people with multiple sclerosis
European journal of public health, 2020
The prioritized strategic actions embodied the definition of Budgetary Actions for the health area and linked the estimated amounts to a set of indicators. All production has generated the formation of a government staff with managerial capacity to strategic planning and evaluation as part of training teams trained by the government.
Clinical pathways for the care of multiple sclerosis patients
Neurología (English Edition), 2010
Introduction: clinical pathways are standard health care methods to coordinate clinical work, reduce inter-clinician variability, improve patient care and increase staff and patient satisfaction. the aim of this study is to develop a clinical pathway capable of organising and developing standard procedures for diagnosis, treatment and care in patients with multiple sclerosis and to coordinate all medical specialists involved in this disease. Methods: A multidisciplinary unit for the care of MS patients was developed. All of them and quality specialists analysed some international evidence-based studies, clinical guides, international guidelines and other clinical neurological pathways in several meetings and designed several documents for the clinical pathways. Results: A clinical pathway was created consisting of a scientific-technical framework, which arranges the care in relation to the diagnosis and treatment. the framework is accompanied by various patient-information documents on the disease, an information sheet on diagnostic procedures and a map of the process. Quality standards were established to achieve continuous improvement in patient care.
Variations in multiple sclerosis practice within Europe – Is it time for a new treatment guideline?
Multiple Sclerosis and Related Disorders, 2016
In the past 5 years, the combination of developments in diagnostic strategy and approval of new diseasemodifying therapies has provided an opportunity to achieve dramatic improvements in patient outcomes in multiple sclerosis (MS). However, across Europe there are several factors that may prevent patients from receiving the best therapy at the appropriate time, and there is variation among countries in terms of which of these factors are most relevant. Here, we review current MS clinical practices in a number of countries in the European Union to identify differences regarding initiation of treatment in patients with clinically isolated syndrome or relapsing-remitting MS, and differences in the timing of treatment switch or escalation. While recognizing that policy is not static in any country, we believe that patients' interests would be better served if a European treatment guideline was developed. Such a guideline could both inform and be informed by national policies, facilitating the dissemination of best clinical practice internationally.
Future MS care: a consensus statement of the MS in the 21st Century Steering Group
Journal of neurology, 2013
The ''MS in the 21st Century'' initiative was established with the purpose of (1) defining how multiple sclerosis (MS) treatment and standards of care should look in the 21st century; (2) developing a minimum standard of care across the world; and (3) motivating the broad MS community to align standards of care and challenge the current treatment paradigm. The aim was to develop a consensus statement to reach and influence the broader MS community. An expert steering group from Europe and Canada-consisting of neurologists, patient advocates, a pharmacoepidemiologist/pharmacoeconomist, and representatives from national MS centers-participated in a series of workshop-driven meetings between February 2011 and 2012. After three phases of discussions, the steering group identified that the overall vision for future care of MS should be full access to personalized treatment, with reimbursement, to achieve freedom from disease. They constructed seven overall principles that support this vision: personalized care, patient engagement, commitment to research, regulatory body education and reimbursement issues, new endpoints in clinical trials, more therapy options, and MS centers of excellence. This consensus statement outlines the key aspects of the seven principles that need to be addressed. The ''MS in the 21st Century
International consensus on quality standards for brain health-focused care in multiple sclerosis
Multiple Sclerosis Journal
Background: Time matters in multiple sclerosis (MS). Irreversible neural damage and cell loss occur from disease onset. The MS community has endorsed a management strategy of prompt diagnosis, timely intervention and regular proactive monitoring of treatment effectiveness and disease activity to improve outcomes in people with MS. Objectives: We sought to develop internationally applicable quality standards for timely, brain health–focused MS care. Methods: A panel of MS specialist neurologists participated in an iterative, online, modified Delphi process to define ‘core’, ‘achievable’ and ‘aspirational’ time frames reflecting minimum, good and high care standards, respectively. A multidisciplinary Reviewing Group (MS nurses, people with MS, allied healthcare professionals) provided insights ensuring recommendations reflected perspectives from multiple stakeholders. Results: Twenty-one MS neurologists from 19 countries reached consensus on most core (25/27), achievable (25/27) and a...
Epidemiology and current treatment of multiple sclerosis in Europe today
2000
Abstract—Multiple sclerosis (MS) is a chronic disease affect- ing the central nervous system, usually leading to early dis- ablement in young adults. At least 350,000 persons in Europe have the disease. Wide variations exist both between ,and within European countries in the incidence and prevalence of the disease as well as in the general standard of care for MS patients.
International Journal of MS Care
BACKGROUND This study evaluates and describes the pattern of services provided for people living with multiple sclerosis (MS) in a local area as a starting point for a more global assessment. METHODS A health care ecosystem approach has been followed using an internationally standardized service classification instrument–the Description and Evaluation of Services and DirectoriEs for Long Term Care (DESDE-LTC)–to identify and describe all services providing care to people with MS in the Australian Capital Territory, Australia. Available services were classified according to the target population into those specifically dedicated to people living with MS and those providing general neurologic services, both public and private, and across both social and health sectors. RESULTS A limited range of services was available. There were no local facilities providing or coordinating multidisciplinary integrated care specific to people with MS. Subspecialty services specific to MS were limited...
Therapeutic advances in neurological disorders, 2018
Multiple sclerosis (MS) experts in Europe are facing rapidly rising demands of excellence due to the increasing complexity of MS therapy and management. A central European expert board of MS experts met to identify needs and obstacles with respect to raising quality of MS care in central and Eastern European countries. There are substantial variations across countries regarding delivery of care and its cost structure, as well as access to treatment. To date, Eastern European countries are often less able to afford reimbursement of immunomodulatory agents than Western countries. Overall, approximately 40% of working-age patients are not working due to MS. Costs rise steeply with increasing disability; indirect costs constitute the bulk of the financial burden in patients with severe MS. Magnetic resonance imaging (MRI) assessment is meanwhile obligatory as the diagnostic interface in the management of MS patients. Recommended measures directed at improving quality of care include the...
A Framework of Care in Multiple Sclerosis, Part 2: Symptomatic Care and Beyond
International journal of MS care
The Consortium of Multiple Sclerosis Centers (CMSC) convened a Framework Taskforce composed of a multidisciplinary group of clinicians and researchers to examine and evaluate the current models of care in multiple sclerosis (MS). The methodology of this project included analysis of a needs assessment survey and an extensive literature review. The outcome of this work is a two-part continuing education series of articles. Part 1, published previously, covered the updated disease phenotypes of MS along with recommendations for the use of disease-modifying therapies. Part 2, presented herein, reviews the variety of symptoms and potential complications of MS. Mobility impairment, spasticity, pain, fatigue, bladder/bowel/sexual dysfunction, cognitive dysfunction, and neuropsychiatric issues are examined, and both pharmacologic and nonpharmacologic interventions are described. Because bladder and bowel symptoms substantially affect health-related quality of life, detailed information abou...